August 09, 2005
A Wedding, The Past, The Present, The Future
I took my wife to the airport this morning... my new wife.
That's right, I got married a couple of weeks ago and I couldn't be happier. While on my honeymoon I had some time to think about this blog and the role that the Huntington's Disease community has in my life. Strangely enough, that ties into my wedding, but I'll get to that in a little bit.
First, let me fill you in on some on some events that I didn't report from earlier this year. This last spring I left a message for a local Huntington's group regarding an upcoming fundraiser. In the past couple of years I've supported the organization with my money & my time. It's a great group which is very supportive of the community and a wonderful collection of volunteers.
My call to them was to offer my services, along with my (then) fiance and daughter, to help with the fundraiser. As expected, one of the key members of this group called me back a couple of days later. What I didn't expect was the ensuing conversation...to say I was 'floored' would be an understatement.
(Warning: Some key elements of this story are missing. This is done to protect the privacy of others, not myself. So if some of this doesn't make 'sense', my apologies.)
The person who called me back is one of the hardest working members in our community. (She puts in an amazing amount of time & energy for the cause of HD. She truly deserves more recognition than she currently receives for all her hard work. Our community is lucky to have her.) I was very surprised when she declined my offer for help. I was more suprised when she questioned my motives for helping out with the event and for participating in the group.
After we finished our conversation and I hung up the phone, my emotions ran the gamut from anger to sadness to hurt to confusion to concern. In sorting out what had happened, I spoke with several people who knew me and were knowledgeable about my involvement with Huntington's Disease. I informed them of what happened, what I was feeling, and I asked if they saw any truth in her statement. With great relief on my part, all the feedback I got back was incredibly supportive of my involvement in the Huntington's Disease community. My fiance, even though my involvement in HD took away time and energy from her, was especially supportive.
So what was this person's concern about my motives? Well,
After I had taken some time to reflect on what she had said and on the feedback of my family & friends, I sat down and wrote out an email to this person. In the email I tried to articulate why I wanted to help the HD community despite having no familial connection to it. I must not have been very persuasive as I never received a response back. I considered writing here about the event at the time, but I felt my emotions were still a bit too raw to do that well.
So why write about it now? What does this have to do with my recent wedding? And...why AM I involved in the HD community when I have no familial connection?
Well, this is where my wedding comes into the story. (I told you I'd get back to that part!) In preparing for the wedding, the minister had us come up with a reading from the Bible. Unlike the process of choosing music, selecting the passage to be read was easy for us - 1 Corinthians 13. I've long had a special attachment to that verse (since I was a child). I even have an excerpt (purchased from Avon of all places) of it on a wall my house. My wife also had a special attachment to that verse.
Now, just about anybody who has attended a few weddings has heard this passage. It may be the most common one used in weddings. It's also one of the most misunderstood passages due to how it translates from the original Greek into English. While the subject of the chapter is 'love', the message is not referring to 'romantic' love. The passage is actually referring to giving selflessly to others.
I've tried to pattern my life on this philosphy (to varying degrees of success and failure) and I've found that I've always been happiest when I've focused on helping others. My mother lived by this philosphy (and it is almost certainly where I first got it). Right before she died, she received an award as 'Volunteer of the Year' for the entire state of Montana. As part of this, she was in the running for National Volunteer of the Year. (I never did learn who nominated her for the award.)
Now, our wedding isn't based on volunteering! We chose that passage because we believe that our marriage will survive and prosper if we continue to give selflessly to each other (as opposed to treating each other selfishly).
As for volunteering, before I became involved in the Huntington's Disease community, I donated a considerable amount of time to various non-profit organizations. Before my life got super-busy, I was averaging about 30 hours a week of volunteering. The time I put in was generally fulfilling but Huntington's Disease struck a special chord with me. In learning about Huntington's Disease, I found this great need for information, both by the public and the HD community. The public often doesn't know this devastating disease exists and members of the HD community often have a hard time finding the information they need. For both the HD community and the public at large there is not enough told about the successes in HD research and how it affects all of us.
And that is why I started this blog. To help spread the word. And since the HD Blog started over two years ago, I've gotten a number of private emails letting me know that I have made a difference in somebody's life. Along with the satisfaction of knowing that I've helped some people, I've also felt guilty about the periods that I have not posted regularly or with content that wasn't as useful. Writing a blog is easy when there is plenty of free time, however...maintaining it is tough when schedules get tight and life's distractions are prevalent.
So, today, my wife is out of town for meeting with her new job...my new daughter is in Mexico building a house for the very-poor... and I'll soon start preparing for a dance event I'm photographing next week. I'm using this free moment to write to you.
As for the future? I've been contemplating that question since my wedding. I plan to continue posting and maintaining the HD Blog as there is still that need in the community. I've missed not being as actively involved and I want to do what little I can to help. Since that conversation a few months ago several friends have pointed out to me a number of people in the HD community who were never at risk for the disease but still provide valuable support through their volunteer efforts. I'll try to do what I can to help.
As for that phone conversation I mentioned? There is still some hurt but I know there was no animosity intended. Her conversation with me was based on addressing something that worried her and the organization she is a part of is continuing to do absolutely great work for the HD community.
I'm sure I'll run into her next month at the biennial Movement Symposium in Denver as most of the active HD community will be there. I'll be attending so that I can report back on the latest news in Huntington's Disease research for those who can't make it and I'm sure she'll be there putting in a lot of tough hours helping out (as always). Hopefully things will go well.
My final comment as I close...If you have some spare time in your life, find ways to donate it to the Huntington's Disease community. There are so many needs and not enough volunteers. You'll find it will be time well spent.
Posted by Dave at 11:13 AM | Comments (0) | TrackBack
July 08, 2005
Deputy Shot
18-year-old with HD shot by deputies.
It sounds like the deputies handled this situation with great restraint:
Barron walked away from officers as they instructed him to drop his weapons, Garcia said. The man told the deputies to "go ahead and shoot me, go ahead and kill me," Garcia said.The father told deputies that the gun his son was holding was a pellet gun, but Garcia said deputies couldn't be sure because "to look at it, it doesn't look like a pellet gun."
At some point, Barron turned and fired the pellet gun, striking one deputy in the neck, according to officials. Still the deputies didn't fire their weapons.
Deputies say it wasn't until Barron lunged at them holding the knife that they shot him.
Posted by Dave at 08:17 AM | Comments (1) | TrackBack
June 23, 2005
"Fiend" Is Accurate
Glasgow (Scotland) Evening Times gets the headline right: "Fiend jailed for savage attacks on sick girlfriend":
A MAN was jailed for three years today for two savage attacks on his girlfriend, who has an incurable disease.In a shocking case of domestic violence, Barry Adams, 24, left Michelle Bain so badly injured she had to have reconstructive surgery for fractured eye sockets.
A nurse described Miss Bain's facial injuries as the worst she had seen in five years in a hospital's accident and emergency unit.
Posted by Dave at 05:41 PM | Comments (0) | TrackBack
June 20, 2005
Marie Gets Some Press
Every year Marie Nemec bikes to the HDSA convention.
No, not just from the hotel...for several hundred miles. She does this to raise money and awareness for Huntington's Disease.
Visit her website here - http://www.bikeforthecure.org.
There is also a nice article on her efforts in the Augusta Chronicle (painful registration process in order to read):
If you see 62-year-old Marie Nemec and 69-year-old Charlotte Reicks riding their bikes toward Thomson today on their way to Washington, Ga., the two ask you to wave....
The women, who cycled to Augusta from Bamberg, S.C., on Sunday, tag-team the ride.
While one starts biking, the other moves their minivan to a point 10 miles down the road, Ms. Reicks said.
Each woman bikes about 10 miles at a time, and the team covers between 60 and 70 miles per day.
They stay with churches, Huntington's families and acquaintances along the way.
...
"My first concern with the first ride was safety," she said, adding they've never felt unsafe on any of their six previous rides. "People seemed like they wanted to help us get there. I came back from that first trip with a new concept of America."
Ms. Nemec learned of the disease through a friend who lost her husband to it. She had to do something to help others coping with the disease, she said, and with a mutual friend and Ms. Reicks, rode the first "Bike for the Cure" in 1999.
...
The women have raised more than $140,000 through their rides, and they hope to reach the $175,000 mark by the end of this trip.
Posted by Dave at 06:34 AM | Comments (0) | TrackBack
June 14, 2005
True Love
It's not all too often that we hear a happy story involving Huntington's Disease but I believe this one counts. From the Greeley Tribune:
Bob Rumsby held both of his wife's hands tightly, looked into her eyes and professed his love to her.He did that 46 years ago and he did it again Monday afternoon at the Windsor Health Care Center.
Rumsby, 69, knows what it means to stay with his wife, Sue, through sickness and in health.
"I believe in that," he said.
The couple celebrated their 46th wedding anniversary by renewing their wedding vows in a far different place than the church they were married at in 1959...
Rumsby said his wife suffers from Huntington's Disease, an inherited degenerative neuropsychiatric disorder that affects the mind and body. A sixth-grade teacher for 20 years in Fort Lupton and Berthoud, Rumsby said his wife quit teaching when diagnosed with the disease in 1989...
As health care resident Sue Thornton released one of the balloons that lifted into the blue skies following the ceremony, she said: "That was marvelous. It's like getting married again. True love stands the test of time."
Posted by Dave at 05:45 AM | Comments (0) | TrackBack
May 05, 2005
More On Mike O'Brien
You can read about Mike's passing on Mt. Everest here.
There is a very nice article in the Palladium Times on the brother's adventure to raise money for Huntington's Disease.
The official website for the brothers has a poignant email written by Mike's girlfriend after their last conversation.
The family is requesting donations in lieu of flowers to the Hereditary Disease Foundation.
One note...Chris O'Brien gets his Doctorate in a few weeks and, according to one paper, is planning on becoming a neurologist.
I believe it would be appropriate for HDSA to recognize the O'Brien brothers at the Annual Guthrie Award Dinner this Fall.
Posted by Dave at 09:15 PM | Comments (0) | TrackBack
May 02, 2005
Dying For The Cause
Last September I wrote about two brothers that were going to attempt to scale Mt. Everest. They were doing this to raise awareness for Huntington's Disease and in the process become the first American brothers to scale Everest together.
Yesterday Mike O'Brien died when he slipped and fell into a crevice while climbing Mt. Everest. He has just finished talking to his girlfriend on the phone when it happened. His brother Chris helped recover the body and is escorting it back to the United States.
My sympathies to the O'Brien's. Their loss is a loss for all of us. Mike and Chris are heroes for risking their lives in an effort to save the lives of those facing Huntington's Disease. We are fortunate to have such good people in our community.
Posted by Dave at 08:47 AM | Comments (0) | TrackBack
February 10, 2005
HD Testing To Be Featured On TV Drama - 2/14
This also comes from HDSA and is great news...
Huntington’s Disease and story line on Everwood (WB network)
The WB network series, Everwood, recently introduced a character who is at risk for Huntington’s Disease. On Monday, February 14, the character will wrestle with whether she is ready to be tested for the HD gene.
Since the WB network is an independent network. Please consult your local television listings for the date, time and channel for this program. In the Northeast, the show will air on Monday, February 14 at 9 p.m. EST. HDSA will monitor the episode and will be in contact with the WB network should there be any inconsistencies to ensure that future episodes are accurate.
Please advise HDSA if you see any other television series that feature Huntington’s Disease so we can contact the production company and lend our assistance. HDSA is currently working with Crossing Jordan and Gray’s Anatomy (mid-season replacement).
You can contact HDSA at hdsainfo@hdsa.org.
Posted by Dave at 06:27 AM | Comments (0) | TrackBack
January 10, 2005
HD Takes Another
It won't be recorded as a death due to Huntington's Disease, but it was...
He started his walk wearing a fleece and cycling shorts and had no food, map or compass, just a small amount of cash and a bottle of energy drink...Two fell runners and a resident urged him to turn back as the weather was terrible, but it is believed he ignored the warnings.
Inspector Mihajlo Milinkovic said: "The weather was horrendous on Tuesday. He had inappropriate clothing for those conditions and he has physical impairments."
Posted by Dave at 06:34 AM | Comments (0) | TrackBack
January 05, 2005
Discrimination Survey
If you have the HD gene or are at risk be sure to visit this page on the HDSA website.
HDSA is attempting to measure the impact of genetic discrimination on those in the HD community. As you take the test, be sure to keep the following in mind (from the instructions):
For the purpose of this study, we define genetic discrimination as any denial of rights, privileges, and/or opportunities based on one's real or perceived chance of developing Huntington's Disease.
Spread the word.
Posted by Dave at 06:35 PM | Comments (0) | TrackBack
January 03, 2005
Yoga & HD Again In The News
Good news for Laura Jean and her DNA Wellness Studios. They are the recipient of another nice news article.
In case you don't remember or are new to this blog, Jean started taking yoga to combat the effects of Huntington's Disease. It's gone so well that she opened her own yoga studio. From the article:
She talked about the mind body connection, with regard to her running regimen. "I need it for the mental health" aspects, she said. She talked about Jean's work with a population of clients with medical conditions ranging from multiple sclerosis and cancer to brain injuries. "Through yoga," Dagle said, "they've been able to overcome a lot of obstacles."
Posted by Dave at 11:14 PM | Comments (0) | TrackBack
December 27, 2004
Name To Remember
It's because of young people like this that I am so positive of about the future. From the Northwest Indiana Times:
Michelle Blessing is working with her siblings, Elizabeth and Robert, to organize a third benefit for the Huntington's Disease Society of America. Huntington's Disease (HD), a rare neurological disorder, has afflicted their family for decades. Their mother has battled the disease since 1998. HD has already robbed them of their grandfather and aunt."Huntington's Disease affects a person emotionally, physically and socially," she said. "We felt instead of sitting back and watching these negative effects on a person carrying the HD gene, we wanted to be able to help in some way, and raising money for research is one way we can help."
The first Blessing/Degnan HDSA Fund-raiser Picnic raised almost $3,000. Last year the event benefiting HD research raised $17,000 - more than tripling their goal. The Blessings are hoping again for an overwhelming response - in attendance as well as in donations from area merchants. "We do hope the public is as generous as last year with donations - that's how we were able to raise so much money," she said thankfully.
Posted by Dave at 06:21 AM | Comments (0) | TrackBack
November 27, 2004
London Medical Conference
This might be of interest to some of our European readers - a two-day medical conference on Neurodegenerative disorders to be held February in London. The details:
=====================================================
2nd Annual Neurodegenerative Disorders 2005
Dates: 16th - 17th February
Workshop: 15th February
Venue: Marriott Kensington, London
=====================================================
**** CONFERENCE BROCHURE AVAILABLE NOW - REQUEST YOURS TODAY ****
2nd Annual Neurodegenerative Disorders 2005 will explore the current unmet needs and highlight opportunities in the market by pinpointing potential therapeutic targets. In this conference, pioneering experts will share their concepts and current findings in novel therapeutic targets and treatments, to expose new pathways into drug developments. In addition, experts from pharmaceutical organization will demonstrate methods to maximize your R&D profit by strategic marketing and building cooperative platform to accelerate drug launches.
THEMES WILL INCLUDE:
**Profit from emerging trends in ND therapeutics **New approaches to improve clinical development for your organization **Learn from the best practice case studies such as: Aventis, Wyeth, Eli Lilly and Roche **Examine areas shaping the future of ND therapies: disease modification, proteomic, phamacogenetics and stem cell therapies **Pinpoint where opportunities lie: explore alliances and collaborations **Advancements in medical technologies **Streamline product launches by integrating business strategies in R&D
KEY SPEAKERS
**Dr. Steve Offord, Head, New Products CNS/Thrombosis, Global Marketing & Medical, Aventis **Dr. Menelas Pangalos, Vice President, Neuroscience Research, Wyeth **Dr. Christian Czech, Senior Research Scientist, CNS Research, Pharmaceutical Division, Roche **Dr. Michel Dib, Medical Director for CNS Department, Aventis **Dr. Michael O'Neill, Team & Project Leader, Discovery Neuroscience, Eli Lilly **Dr. Brian Dickie, Director, Research, Motor Neuron Disease Association **Dr. David Burn, Consultant Neurologist & Reader in Movement Disorder Neurology, Newcastle General Hospital **Dr. Ana Martinez, Director, R&D, Neuropharma **Dr. Jette Bisgaard Boll, Department of Molecular Disease Biology, Lundbeck **Dr. Karoly Nikolich, Founder & Chief Scientific Officer, AGY Therapeutics **Dr. Johan Häggblad, Head, Business Development, NeuroNova **Dr. Grant Krafft, Chairman & Chief Scientific Officer, Acumen Pharmaceuticals
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WHO SHOULD ATTEND
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**Director, CNS Clinical Discovery & Human Pharmacology **Director, R&D **Project Leader, Neurology Project Management Group **Vice President, Drug Development **Chief Scientific Officer **Chief Operating Officer **Clinical Pharmacologist **Managing Director **General Counsel **Medical Director, Internal Medicines **Medical Manager
---------------------
DELEGATE REGISTRATION
---------------------
Places at this event are strictly limited so BOOK YOUR PLACE NOW.
To make a booking on this event, please contact me via phone or email. Book early to secure a place.
- PRICING -
Attend the:
2 Day conference - ONLY GBP1299 plus VAT
- BOOKINGS -
Booking is easy, simply contact me:
Joe Stone
Account Manager - Conference Division
Visiongain B2B Conferences
Tel. +44(0)20 8767 6711
Fax. +44(0)20 8767 5001
mailto:joe.stone@visiongain.com
B2B Conferences is part of the Visiongain Group
**** FULL CONFERENCE AGENDA BELOW ****
=======================================================================
PRE-CONFERENCE INTERACTIVE WORKSHOP Tuesday 15th February 2005 Strategies for Pricing and Market Access of New Neurodegenerative Drugs Led by: Ulf Munack, Director, Simon-Kucher & Partners =======================================================================
Workshop schedule
This workshop will give you the opportunity to engage in knowledge-sharing with fellow professionals, which can result in brainstorming and creating ideas which you can use back in your own organisation. You can gain a greater understanding of the pricing of neurodegenerative disorder drugs, have detailed discussions about market access and new ventures.
It is of most use to those who are willing and prepared to engage in meaningful discussions and network with others.
This 'facilitated open-space' provides you with ideas and time to explore possible new tideas and benchmark them against other approaches.
Main topics of discussion:
* P&R environment for NDs products in 2005
* Critical success factors for market access in neurodegenerative disorder
* Examples of recent learning from new ND drug launches
* What it means for R&D
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Day One Wednesday 16th February 2005
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Conference Chair Day One
Dr. Michel Dib
Medical Director, CNS
Aventis
09:00 Registration and coffee
09:30 Opening remarks from the chair
GLOBAL MARKET TRENDS IN NEURODEGENERATIVE DISORDERS
09:40 Focusing on Clinical NDs Drug Development
* What are the methodological issues in NDs clinical R&D?
- Human models, proof of concept & time of intervention
* Biomarkers in ND: from the diagnosis to the therapy
- What we can do? Methods to effectively utilise biomarkers
* What is the development plan for a new drug in the NDs?
* Can we speak about one neurodegenerative process in all
these diseases?
- Lessons from the past, consequences for the future
Dr. Michel Dib
Medical Director, CNS
Aventis
10:20 CASE STUDY: Glutamate Mechanisms - Promising Therapeutic Target?
* Glutamate receptor subtypes: Review of biology &
pharmacology - What have we learnt so far?
* How to use glutamate pathways to search for effective
neuroprotection?
* Examine efficaious results of in vitro neuroprotective studies
* How to modulate glutamate to develop novel therapies?
* Explore NMDA, AMPA and mGlu receptors: Examples of in
vivo neuroprotection
* Evaluate current clinical data of neuroprotective properties
Dr. Michael O'Neill
Team & Project Leader, Discovery Neuroscience Eli Lilly
11:00 Coffee
11:20 CASE STUDY: Novel Insights & Therapeutic Opportunities
* Human CNS disease - A global health concern
* Conceptual & technical approaches towards novel therapies
- Genomics and proteomics: how effective are they?
* Analyse AGY's approaches to CNS R&D development
- Focus on mechanistic pathways: Genomics & proteomics
* Explore novel mechanistic pathway involved in NDs
* Understand the underlying cause of the diseases
* Future outlook of NDs R&D: Pinpoint where opportunities lie
Dr. Karoly Nikolich
Founder & Chief Scientific Officer
AGY Therapeutics
12:00 CASE STUDY: Targeting Stem Cell Therapies
* Focus on the underlying cause of neurodegeneration
* How to develop compounds to target stem cells?
* "Therapeutic Neurogenesis" - analyse the mechanism of action
* Examine clinical evidence of efficacious results
* Explore potential candidates - possible collaboration?
* The future prospects of stem cell therapies' clinical application?
- Discover where opportunities lie within stem cell therapies
- How can the technology be implemented into your R&D?
Dr. Johan Häggblad
Head, Business Development
NeuroNova
12:40 Lunch
14:00 Integrating Business Strategies into NDs R&D
* Methods to develop common mechanism platforms
* Cross-functional team - Enhance communication between
departments i.e. marketing vs scientists
- Feasibility, regulatory risks, unmet needs and market value
* How to shorten time of profit vacuum?
- Create commercial strategies at early stage
- Optimize scientific creativity
* Understanding the value of NDs drugs
Dr. Steve Offord
Head, New Products CNS/Thrombosis, Global Marketing & Medical Aventis
ADVANCES IN THE TREATMENT OF PARKINSON'S DISEASE
14:40 Understanding PD Unmet Needs
* R&D advancements through the years:What have we learnt so far?
* Designing novel PD therapies - Multifactorial considerations
- Motor and non-motor complications
* Examine potential therapeutic targets
* Promising compounds in the pipeline
- Clinical evidence, trial data and safety assessment
* What do we hope for in the future
Dr. David Burn
Consultant Neurologist & Reader in Movement Disorder Neurology Newcastle General Hospital
15:20 Afternoon Tea
15:40 CASE STUDY: Collaborated Approach to Novel Therapy
* Identify current problematic issues faced by physicians
- Transplantation of embryonic nigral tissues
- Poor survival of dopaminergic neurones
* CEP-1347 - mixed-lineage-kinase (MLK) inhibitor: Discover
mechanism of action and efficacious results
* The future of the compound - A collaborated effort
* The pros and cons of collaborated approaches - What to watch
for and ideas to resolve problematic issues
Dr. Jette Bisgaard Boll
Department of Molecular Disease Biology
Lundbeck
16:20 CASE STUDY: Advancements in Medical Technologies
* Symptomatic relief: dyskinetic movements
* Implantation procedures and mechanism of action
* Current success stories in surgical interventions
- Activa and N'Vision Programmer
* Areas of improvement: Where partnerships can be formed
* Positive clinical results of mid-brain stimulation on other
symptoms:Pinpoint areas of combination therapies
Dr. Abed Hammoud
Procedure Solution Manager, Neurological Medtronic
NOVEL THERAPEUTIC TARGETS IN ALZHEIMER'S DISEASE
17:00 CASE STUDY: Anti-ADDL Therapeutics: Reversing Synaptic Degeneration and LTP Deficits
* ADDLs, NOT fibrils, cause AD and MCI
* Evidence: ADDLs attack specific synapses to compromise LTP
* ADDL intervention strategies - treatment and prevention
* Explore anti-ADDL antibody therapeutics - What can you learn?
- Discovery of ADDL assembly blockers and receptor antagonists
* What are the future outlook of Anti-ADDL therapeutics?
Dr. Grant Krafft
Chairman and Chief Scientific Officer
Acumen Pharmaceuticals
17:40 Question and Discussion
18:00 Summation of Day One from Chairman
===================================
Day Two Thursday 17th February 2005
===================================
Conference Chair Day Two
Dr. Menelas Pangalos
Vice President, Neuroscience Research
Wyeth
09:00 Registration and coffee
09:30 Opening remarks from the chair
09:40 CASE STUDY: Challenges in CNS Drug Discovery
* Why is CNS drug discovery so important?
* Anaylse NDs prevalence statistics and unmet needs
* Problematic issues with long-winding drug discovery process
* Wyeth's AD drug discovery programmes
- Explore novel therapeutic targets
- How to expand R&D pipeline?
* Focus on advancement in clinical approaches and trends in
collaboration - What can you implement?
Dr. Menelas Pangalos
Vice President, Neuroscience Research
Wyeth
10:20 CASE STUDY: New Disease Modifying Approaches in AD
* Roche's approach to AD R&D -Disease modification therapies
- Target amyloid and APP to delay disease progression
- What can you implement in your pipeline?
* Analyse current promising compounds in Roche's AD pipeline
- Analyse efficacious clinical results and drug trials
* Focus on cost effective therapies to optimize market needs
- Novel methods to penetrate the market
* Future outlook on AD's clinical studies - identifying global
market trends
Dr. Christian Czech
Senior Research Scientist, CNS Research Pharmaceutical Division Roche
11:00 Morning Coffee
11:20 CASE STUDY: Neuropharma's Neuroprotective Project
* Identify new neuroprotective agents and neuroprotective
activity detection methods
* Systematic search for neuronal antioxidants & calcium
channel antagonists -Explore other new targets & candidates
* Current pipeline analysis: NP031112 non atp-competitive
GSK- 3ß enzyme inhibitor - Positive neuroprotectors
* Neuropharma's future approaches in AD R&D and novel
ideas on neuroprotective strategies
Dr. Ana Martinez
Director, R&D
Neuropharma
EMERGING TRENDS IN MOTOR NEURON DISEASE THERAPIES
12:00 Targeting Clinical R&D of Motor Neurone Disease
* Overview of MNDs and the importance of treatments
* Current clinical drug trials & explore promising compounds
* Forecast of what will cause an impact on MNDs therapies
- Examine mutant genes & protein aggregation in MND
- Implement new therapeutic targets to penetrate MNDs market
* What is HUGO and how will it impact MNDs R&D discoveries?
* Identify current unmet needs & unmet needs in the market
* How to improve overall treatments?
Dr. Brian Dickie
Director, Research
Motor Neuron Disease Association
12:40 Lunch
14:00 CASE STUDY: Explore Emerging Options in Multiple Sclerosis Therapeutics
* Overview - Aetiology, pathophysiology and unmet needs
* The MS therapeutics pipeline - Multiple targeting strategies
* Immunopathological hypothesis - Targeting CNS inflammation
- Examine evidence of promising results
* Discover neuroprotection approaches - Targeting axonal loss
* BTG Ageing & Neuroscience's team focus on MS
- Novel concepts and therapeutic targets
* What is the future of MS therapies? Market trends and ways to
predict answers to global unmet needs
Dr. Russell Hagan
Head, Ageing and Neuroscience
BTG
14:40 CASE STUDY: Methods to Identify Biological Markers in CNS Development
* Calpain inhibitors as "magic bullets" in the treatment
of CNS disorders - Examine evidence of efficacious results
* Discover the activation of calpain in neurodegeneration
- Mechanism of action and therapeutic properties
* Therapeutic approaches using calpain inhibitors in the
treatment of DMD, MS, hearing loss and retinal degeneration
- Methods to utilise calpain inhibitors in each treatment
* Positive result on delaying degeneration of ALS
Dr. Alfred Stracher
Distinguished Professor & Chair / President & CEO State University of New York, CEPTOR Corp
15:20 Afternoon Tea
EXPLORE NEW SCIENCE IN NEURODEGENERATIVE DISEASES
15:40 CASE STUDY: Promising New Drug - Miraxion
* Etiology of Huntington's disease & global unmet needs
* Miraxion - Therapeutic target and mechanism of action
* Positive clinical trial results and recent multicentre studies data
- Near term focus and targeted developmental approach
* Estimated Miraxion global sales -How will it impact the market?
* Opportunities in terms of market space and development?
* What to expect in the coming years? Amarin's future
approach and ideas in Huntington's R&D
Rick Stewart
CEO
Amarin
16:20 CASE STUDY: Examine Possible Role of Chaperones in Protein Aggregation
* Overview of Prion disease: Global prevalence & unmet needs
- What have we learnt about Prion & aberrant proteins?
* Current therapeutic treatments and targets in Prion R&D
* Examine chaperone-facilitator: an RNA and non-nucleic acid
serum component - Mechanism of action and efficacy studies
* Possible therapeutic targets against Prion and other protein
misfolding disease? Current evidence to show promising results
Dr. Abraham Grossman
Founder and Chief Scientific Officer
Q-RNA
17:00 Questions and Discussion
17:20 Summation of Conference from chairman
17:30 Close of Conference
Terms & Conditions
NB - Due to high demand, we do not 'reserve' or 'hold' places - a request for an invoice to be raised will be treated as an official booking and will be subject to the cancellation policy as outlined below.
Cancellations/substitutions and name changes: All bookings carry a 50% liability after the booking has been made, by post fax, email or web. There will be no refunds for cancellations received on or after one month before the start of the conference (e.g. cancellation on or after 20th January for a conference starting on 20th February). If you decide to cancel after this date the full invoice remains payable. Conference notes, which are available on the day, will be sent to you. Unfortunately we are not able to transfer places between conferences and executive briefings. However if you are unable to attend the event you may make a substitution/name change at any time as long as we are informed in writing by e-mail, fax or post. Name changes and substitutions must be from the same company and are not transferable between companies or countries.
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Posted by Dave at 07:35 AM | Comments (0) | TrackBack
November 11, 2004
HD Fundraiser In New Jersey
Research is Joan Hunters' only ray of hope.
She hopes Sunday's fund-raiser serves two purposes -- make people more aware of the disease and raise money for a cure. The family intends to make this an annual event.
Nicole Valente, a Sebastiano's employee and family friend, said she knows what's like to lose a child. She lost three of her four children when fire tore through their Alpha home in March.
Through her ordeal, Valente said the Hunter family did a lot to help her. Wanting to do the same for them, she helped organize the benefit.
"I wanted to give something back," Valente said. "They are so close to my heart."
Valente hopes other community members will follow the lead and give what they can.
"You're talking about somebody's whole family that is affected," she said. "We can't just sit back and do nothing while people die. We need to band together as a community."
Posted by Dave at 05:26 AM | Comments (0) | TrackBack
October 19, 2004
Hit & Run Hits HD Family
An unknown driver took the life of Seth Elmore, a 42-year-old man who was helping care for his brother & sister who have Huntington's Disease. Seth himself was also starting to experience some of the symptoms of the disease.
From the article:
When Elmore's parents died, he moved back to Rockford to help care for his brother and sister who suffer from Huntington's, a degenerative brain disease that Elmore was also starting to battle.
"He was in the early stages of Huntington's and was very fiercely trying to maintain his independence," says Bauer.
Despite the disease, Elmore worked part time while helping to care for his brother and sister and lead a full and active life.
Even now, Elmore will continue to make the lives of other better. His family has donated his organs to help individuals with medical needs.
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October 01, 2004
HDAC Website A "Must Visit"
If you haven't been by the HDAC (Huntington's Disease Advocacy Center) website lately, be sure to check it out.
In the last few months they've updated their format and are very actively posting updates on Huntington's Disease. While you're there be sure peak around their website. You'll find many resources that you won't find (easily) anywhere else. I particularly like their "first-person" stories of coping with Huntington's Disease.
"Check it out!"
Posted by Dave at 11:47 AM | Comments (0) | TrackBack
September 25, 2004
Lawn Mower Racers Still Raising Money For HD
I caught this nice article on the Mikula's - the family that has raised money for Huntington's Disease by putting on a Lawn Mower Race. I wrote about them last year and I'm glad to see they did again this year. Here's an excerpt from the article:
Keech and Mikula travel the national circuit, which takes them to eight to 12 races each year in Alabama, Ohio, Illinois, Wisconsin, Tennessee and Missouri. They follow the Michigan Lawn Mower Racing Association, too.
The two also are on the Sparta fair board, and they organized a race this summer at the Sparta airport during Town & Country Days and donated proceeds to help fight Huntington's Disease.
Posted by Dave at 10:56 AM | Comments (0) | TrackBack
September 21, 2004
Pat Hanley -RIP
Famed New Zealand painter Pat Hanly has passed away due to Huntington's Disease. From a news article:
"He made a huge contribution to New Zealand art. He had a passion for both painting and printmaking, and has been a wonderful teacher to many people."
Hanly was considered one of New Zealand's leading modernist painters and printmakers, as well as a feisty and outspoken activist. The New Zealand Who's Who lists his hobbies as "Kite-flying, sailing, Greenpeace".
He travelled to Europe for various residencies in the late 1950s, and absorbed influences such as Picasso and Chagall.
He returned to New Zealand in 1962 and settled in Auckland, becoming a part-time lecturer at the university's school of architecture. His work is held in all the major public galleries in the country.
He is survived by his wife, photographer Gil Tavernor and three children.
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September 17, 2004
"As If" - Part II Posted
HDAC.org has posted the second part of the wonderfully written "As If" article. Be sure to check it out. Here's an excerpt:
...I held my emotions in tight until my sister went to bed in the room we were supposed to be sharing. Only my clothing and other belongings slept in that room with her, that night and all those before. Declaring the living room sofa more comfortable and better for my back, I did my sleeping out there because I did not want to share a room, did not want to be with my sister. All the feelings and observations I had experienced on this vacation, came flooding back as I sat alone in the darkness on the deck overlooking the beautiful lake. I went inside periodically, inside where there was light and laughter, a lively card game tournament going on between the others of our ‘party’. Wiping my tears first and composing myself, I would grab another beer from the refrigerator and then retreat to the darkness outside. ...
Posted by Dave at 11:36 PM | Comments (0) | TrackBack
September 13, 2004
French Huntington's Website
If you speek French (or even if you don't) check out this French website on Huntington's Disease - http://huntington.free.fr.
The creator, Phil Coty, has the same issues in his country as our community has in other countries - getting the word out about Huntington's disease. Here's what he wrote me:
It is filled with two kind of informations: some gathered and written by me and other simply translated from English into French so that the French speaking community can access those documents.
The main purpose of this site, at this stage, is not to focus on a specific scientific topic, but to show that a worldwide community exists around HD and that this community is working hard, a fact that most of the people here do not really know precisely (I mean ordinary people who must face HD not the scientists involved in research).
I owe Phil an email back. He states his English isn't very good, but I disagree. Of course, I've been accused of mangling the English language so...
Thanks for your work Phil!
Posted by Dave at 11:05 PM | Comments (1) | TrackBack
Everest
Two brothers are planning to become the first American brothers to scale Mt Everest together. Why do such a dangerous thing?
To raise money for Huntington's Disease research!
Sounds a bit crazy to me, but they have my full support. If you're going to be in or around Chicago on October 10th you can meet them at Belly's. (More info here.)
They hope to raise $100,000 for the Hereditary Disease Foundation (HDF). You can donate online here.
Hat tip to Gerard for emailing me about this adventure!
Posted by Dave at 06:50 PM | Comments (0) | TrackBack
September 03, 2004
Larry Gatlin
One of these days the local HDSA chapter is going to have to straighten out their mailing list. Until then I can rely on the local paper to tell me what's going on with the chapter.
Looks like we have another celebrity to thank for supporting Huntington's Disease - Larry Gatlin. Here's the snippet:
DOINGS: Grammy Award-winner Larry Gatlin will be the lead entertainer at the Celebration of Hope, the sixth annual fund-raiser for the Huntington's Disease Society of America, beginning at 6 p.m. Wednesday in the Seawell Ballroom at the Denver Performing Arts Complex. Distinguished Leadership Awards for outstanding community service will be presented to Wendy Aiello, Aimee Sporer Caplis and Dan Caplis, Douglas Kerbs and Kroenke Sports Enterprises. News 4's Ed Greene will emcee, and TV legal analyst Norm Early will be the auctioneer. Info: www.blacktie-colorado.com/rsvp, code COH, or call 303-947-5209.
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September 02, 2004
Lamps for HD
The ideas for raising money for Huntington's Disease are endless. What makes some ideas more successful than others is the passion of those involved. We've seen lawnmower racing and now we have another unique idea...
Lamps
Yep, they make lamps for HD and so far they've raised over $270,000! Here's some excerpts from an article on this wonderful couple in New Zealand:
The Clintons arrived in Marlborough earlier this year after a three-year stint in Moscow, where Mr Clinton was a maintenance officer at the New Zealand embassy.
While there, the pair came up with the idea of making the flamboyantly shaped lamps and spent some time coming up with designs.
They describe the lamps as "mood lighting" which creates a soft ambience in which people can wind down in.
All sorts of materials are incorporated in the shades, including sheets of music, tassels, leopard prints, thick furs, and coloured fish skins.
They said the name of their business - Lampworks, Art That Shines - reflected the idea that the shades were works of art which had been created with care.
The Clintons plan to launch the enterprise officially on September 13 with a display at The Millennium Art Gallery and hope to sell the lighting around New Zealand.
Posted by Dave at 09:01 PM | Comments (0) | TrackBack
August 29, 2004
Eight Simple Rules
No TV show has done more for Huntington's Disease than the comedy "Eight Simple Rules".
The cast members are continuing to show their support for our community. This time it is for the fifth annual Millard Days Walk, Run & Bike for Mind and Body in Omaha, Nebraska.
Attending will be Billy Aaron Brown and Amy Davidson, co-stars on the hit ABC comedy "8 Simple Rules." Brown plays the boyfriend, "Kyle," of Davidson's character, "Kerry."
Brown, a Clarinda native, is a national spokesman for the Huntington's Disease Society of America. In addition to co-starring in "8 Simple Rules," he has also appeared in the feature film "Jeepers Creepers 2," the Disney Channel movie "Going to the Mat" and the Olsen twins movies "Holiday in the Sun" and "Getting There."
Davidson grew up in Phoenix and was introduced into an entertainment career through dancing. Since relocating to the Los Angeles area, she landed a recurring role on the ABC Family series "So Little Time," guest-starred on "Judging Amy" and appeared in the Lifetime movie "The Truth about Jane."
These two young actors will be in Omaha to help raise awareness and funds for Huntington's Disease...
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August 20, 2004
$125,000
That's the award being offered for the robbers that killed Jason Schwindler, a loving man with a pHD wife and 13-month-old son.
He's worth more than that but, still, an impressive award. Let's hope somebody gets to spend that money - soon.
Posted by Dave at 12:05 AM | Comments (0) | TrackBack
Bronze, Silver?
The Guardian comments on Sarah Winckless's Olympic quest:
Elise Laverick and Sarah Winckless have shown commendable coolness in the women's double this season, and it may be between them and Bulgaria for the bronze. The two Britons have improved with each race and, if Winckless times her finishing burst to perfection, even the silver may be there for the taking.
Posted by Dave at 12:03 AM | Comments (0) | TrackBack
August 18, 2004
Winckless - Olympic Finals!
Sarah Winkless and her crewmate Elise Laverick have made it to the Olympic finals of the 'double sculls' rowing event. The finals will be held on Sunday and they have a very good chance at getting a medal.
Sarah is a great example to the world of what a person with the Huntington's gene can accomplish. (Now if we can only ban discrimination of those who've tested positive.)
Here's what one article had to say on their performance:
However, the British women's team now have three finalists with good medal chances, thanks to brilliant repêchages by Sarah Winckless and Elise Laverick in the double sculls and Katherine Grainger and Cath Bishop in the pairs.
Winckless and Laverick were a couple of seconds behind the Romanians Camelia Mihalcea and Simona Strimbeschi with three-quarters of the way gone, and then swung into a stroke that took them to victory by three seconds.
Ain't it great!
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August 17, 2004
More On Winckless
A little more Sarah Winkless, the HD gene positive British sculler who is participating in the Olympics. From The Independent:
But the British women, both veterans of the Sydney team, are strong contenders for the other medals.
Winckless is a Cambridge graduate who combines consultancy in marketing with rowing, while Laverick is a master of the double bass as well as the double scull, having studied at the Guildhall School of Music and Drama.
The versatility of the crews was shown at the Munich round of the World Cup when Winckless substituted for Houghton in the quad as well as doing her own event, and won silver medals in both.
The coaches have honed good technique with strong motivation. "We always knew it was in all our interests to bring our single sculling technique as close to the crew boats as we could," Winckless says. "We had three camps in Seville without single boats, so we all rowed with everyone, and that's something that's come very much from the top and has been very much pushed."
She'll be back at it tomorrow and I'll post the results.
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August 16, 2004
Olympian pHD Update
I'm looking for more news, but so far it appears that Sarah Winckless is having a good Olympics.
Sarah is a rower for England who has tested positive for the Huntington's gene. She is competing in the double sculls event. Here's a bit on her performance on the 14th:
However, arguably the most impressive British performance arrived in the women’s double sculls where Sarah Winckless and Elise Laverick threatened to upset New Zealander twins Georgina Evers-Swindell and Caroline Evers-Swindell, but ultimately settled for safe passage into the next stage.
Posted by Dave at 11:20 PM | Comments (0) | TrackBack
August 11, 2004
Another Biker For HD
18-year-old Tom Andrews is bicycling 1000 miles over a two week period as a fundraiser. Part of what he raises will go the Huntington's Disease Association (England). You can read all about it here.
You have to admire these riders who take two and three week rides to raise money and awareness for Huntington's Disease. Marie, Boyd, and Tom...thanks!
Posted by Dave at 10:06 PM | Comments (0) | TrackBack
August 10, 2004
Shooting Update
Police are still looking for the three men that shot Jason Schwindler (See here.) As you may recall, Jason's wife has Huntington's Disease. Their 13-month-old son is at risk for this disease.
Best wishes to the entire family.
Posted by Dave at 07:56 PM | Comments (1) | TrackBack
August 08, 2004
pHD's Husband Slain
Today's Washington Post has a sad story of Chrissy Schwindler, a woman with Huntington's disease and 13-month-old baby, whose husband was killed while working for an armored car company. Her husband, Jason Schwindler, was ambushed outside of a bank and shot three times.
He sounds like he was a wonderful husband, some excerpts:
Swindler knew his wife's condition was "only going to go downhill," Randy Clemens said. (Chrissy declined an interview request.) "But he didn't leave. He stuck with her. . . . His whole world revolved around Chrissy and Nate."
When she developed the random compulsions that often accompany the disease -- in her case, a yearning for Starbucks coffee -- he would take her to get coffee before and after work. Just to make her smile, Clemens said.
Nathan would run to the door clamoring for his father when he came home, looking forward to wrestling and playing trucks. The little boy doesn't yet understand what happened, said Chrissy's mother, Brenda Clemens.
"I don't think he realizes it," she said. "We showed him a picture of his daddy, and he started smiling and laughing."
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July 29, 2004
A Novena For HD
I got this request from a reader, Anne-Marie. It's the kind of request that is hard to refuse. She requested that I post this request, and while I'm not Catholic, I appreciate the importance of the request.
It's for a wonderful cause...Huntington's Disease. Here's her request:
Below is a letter that I have sent out to my family and friends. If you are drawn to prayer, please consider joining us. My belief in prayer has grown deeper as I continue to live a full life with stage 4 breast cancer. My fourth of five cancers since I was 21 years old (43 years old this month). I started wearing the Miraculous Medal 3.5 years ago and believe many prayers are being answered on my behalf. Let’s storm heaven and get God’s help today.
Annie B
Dear Family and Friends,
I am writing to invite you to join me in praying a novena for the following prayer intentions: a cure/treatment for Huntington’s disease, for breast cancer and for melanoma along with the personal prayer intentions that rest on the heart of each person joining me in this Novena.
On December 8, 2004, the Catholic Church will celebrate the 150th Anniversary of the Dogma of the Immaculate Conception of Mary, the mother of God along with the approval of the Miraculous Medal as a sacramental medal.
Many miracles have been attributed to the Miraculous Medal. My hope is that by praying to Mary of the Immaculate Conception during this anniversary year, her promise of grace to those who pray and wear this medal will be fulfilled.
December 8th also marks the one-year anniversary of our Dad’s death from Huntington’s Disease. Dad has seen the face of God and I believe that he joins us in petitioning God for help. My plan is to pray the novena twice this year on the following dates, each time ending on a feast day of Our Lady:
August 4th –August 15th, The Feast of the Assumption
November 30th – December 8th, The Feast of the Immaculate Conception and the 150th Anniversary of its promulgation
Please consider joining me in praying this Novena either individually or as a family. I believe many graces await our petitions.
The following web sites provide the story of the Miraculous Medal, a place to request individual medals and the Novena. Peace be with you.
http://www.amm.org/medalp.htm Story of Miraculous Medal and free medal.
Love, Annie B
Posted by Dave at 07:35 PM | Comments (0) | TrackBack
A Star For HD
The late John Ritter's son, Jason Ritter, is working on behalf of Huntington's Disease. No, it isn't in the Ritter family. His girlfriend and a friend both have it in their families.
It's wonderful to see celebrity support for Huntington's Disease. So many celebrities choose the "in" charity, but not one that needs a major celebrity (such as HD). I'm now a big fan. Here's the relevant excerpt from the article:
Ritter lives with his girlfriend, stage actress Marianna Palka, whom he met in New York City. And after becoming friends with 8 Simple Rules guest star Billy Brown (who played Kyle), Ritter started speaking on behalf of research to help cure Huntington's disease - which has affected Brown's and Palka's families. It is a genetic disease that causes degeneration of brain cells
"We want to get awareness out there and get stem-cell research," Ritter said.
We may want to let him know there is stem cell research and that there is other research that is VERY promising.
Posted by Dave at 06:46 PM | Comments (0) | TrackBack
July 26, 2004
pHD In The Olympics!
Yep! British oarswoman Sarah Winckless will be in Athens next month and she has a real chance for a medal.
Winckless will again compete in the double in Athens, this time with Elise Laverick. On the sidelines will sit her mother -- a reminder of what the future holds.
Winckless's mother was diagnosed with Huntington's disease in 1996 and her daughter took the test shortly after.
"I was very calm when I found out," Winckless said. "It was something mum had had diagnosed about six months earlier and I was fully prepared that the test could go either way.
"To be honest I've just got on with my life."...
Winckless says the fact she carries the gene does not affect her preparation for the Games but, with a Cambridge University degree and a marketing career, she has several other options to consider when she returns from Athens in September.
"I don't think anyone knows what the future holds," she said.
"I think the very nature of sport is you take it a year at a time and I don't think the fact that I've got the gene makes my goal-setting or my attitude any different from anyone else in the squad."
She sounds like an incredible woman. I'll be one person on this side of the 'pond' cheering for her!
Posted by Dave at 10:26 PM | Comments (0) | TrackBack
July 17, 2004
"Why Was I The Only One Spared?"
Sometimes we ask the most important questions of ourselves when we face a crossroads in our lives.
In the midst of a life of losing his family to Huntington's, Boyd Runnings got tested for the disease. The results were negative and it was then he asked the question "Why was I the only one spared?"
His answer to that question has led him to undertake a 500-mile, 3 1/2 week adventure to raise money and awareness for Huntington's Disease. Read the following to learn more about this man and what you can help him. All money raised from this hike will be used for supporting families dealing with this disease.
Much of the attention of today's media goes towards the effort to fight commonly known diseases such as HIV, cancers, and Alzheimer's disease. However, an equally valiant fight is being made to fight Huntington's disease (HD), a less commonly known, but just as devastating disease.
Huntington's disease, a progressively degenerative brain disorder, causes those affected to slowly lose control of their muscle movements, thoughts, and emotions. Tasks that most of us find innate, like grocery shopping, paying the bills, or even swallowing can become impossible for those who suffer from HD. This steady deterioration can continue for decades and eventually leaves the sufferer in a coma-like state, until their death.
Huntington's disease can be particularly trying for the families of those affected. Not only must they watch a loved one fade away, but the children of HD sufferers must live in perpetual fear of developing the disease themselves. Children of a parent with HD have a 50-50 chance of inheriting the gene, which causes HD. Those that do will eventually develop the disease. Little is known about Huntington's disease. While physicians can test for the presence of the HD gene, nothing can be done to prevent or reverse the course of the disease. However, the hope of finding a cure remains.
Boyd Runnings, who comes from a family heavily afflicted with HD, has taken up his own unique efforts to battle the devastating effects of HD. Boyd's great grandmother had Huntington's disease. She passed it to her son, Boyd's grandfather. Boyd's grandmother not only cared for her ill husband, but at the same time was lovingly caring for her husband's mother. Unfortunately Boyd's grandfather could no longer live with the agony and committed suicide.
Boyd's father and uncle both inherited the gene and developed the disease. Boyd's father passed away in a nursing home in 1985 at the age of 49. His uncle 's death was ruled an accident, but no one knows for certain. Boyd had only one sister. She began showing symptoms in her mid twenties and passed away in 2003, at the age of 49. She left behind four children, who are all at risk of developing this devastating disease. Boyd has already lost one of his cousins to HD and the other is currently suffering severely from the disease and must have constant nursing care.
Boyd was left with a tormenting question: "Do I have this gene that will take my life in such a cruel manner and wreck havoc on those close to me?"
Questions became a huge part of Boyd's everyday life. Boyd describes these questions as "psychological torment". Boyd recently decided to have genetic testing for the gene that causes HD. The outcome was a blessing for Boyd and his family. He is gene negative, which means that he will not develop the disease and he did not pass it on to his son. What a relief for Boyd, but it left him with still more questions. "Why was I the only one spared?" "What can I do to help end these tragic Huntington's family sagas?"
Boyd has set out on a "mission of hope" to spread awareness of HD along the American Discovery Trail, a stretch covering 500 miles between Omaha, NE and Denver, CO. Boyd will set out on his journey August 1st and is scheduled to arrive in Denver on August 25th.
Boyd cannot make this journey without support. We hope that you will consider joining Boyd on his journey and help raise funds to support Research for a Cure, Care for those afflicted and raise Awareness of the tragic effects of deadly disease. If you wish to support Boyd's efforts or would like additional information, please contact:
Jackie Herbst
Regional Development Coordinator
HDSA, Rocky Mountain Region
6545 W. 44th Ave. Unit #1
Wheat Ridge, CO 80033
Phone: 303-837-9937
Fax: 303-837-8983
Email: HerbstJA (at) aol (dot) com
Posted by Dave at 11:55 AM | Comments (2) | TrackBack
July 14, 2004
Charles Banks Wilson
He's the artist that painted the Woody Guthrie portait that was hung in the Oklahoma state capitol today.
Mr. Charles Banks Wilson is donating his entire fee to "the fight against Huntington's Disease"
Thanks go to you Mr. Wilson.
From another article on the portrait:
Artist Charles Banks Wilson chose Guthrie as the subject when asked to do another Capitol portrait, said state Sen. Charles Ford of Tulsa, president of the Oklahoma Senate Historical Preservation Fund.
Wilson, a former Oklahoman who now lives in Fayetteville, Ark., has spent much of his career painting documentary portraits of Oklahomans.
Among those depicted in Wilson's portraits that hang in the Capitol are Will Rogers, Oklahoma's favorite son, and Jim Thorpe, the legendary Olympic athlete.
Posted by Dave at 07:33 PM | Comments (0) | TrackBack
Shana Martin To Be On ESPN
Shana posted the ESPN schedule of her performances at the Outdoor Games on the Hunt-Dis email list. Here's the schedule:
Saturday 7/17 ABC Wide World of Sports:
Women's Boom Run 2:30 - 3:30pm
(this is where I get my butt kicked pretty quick)
Sunday 7/18 ESPN:
Mixed Doubles Boom Run 1 - 3:30pm
(I get lots of TV time here!)
Monday 7/19 ESPN 2:
Mixed Doubles Boom Run 4:30pm - 7pm
Be sure to visit Shana's website.
Posted by Dave at 07:26 AM | Comments (0) | TrackBack
July 13, 2004
Gold Medal!!!
The HD community's own Shana Martin earned a gold medal last weekend in Outdoor Games. This is her first gold medal in the games. In previous years she has earned two silver medals.
You can get the pictures and full story here on ESPN.com. Shana's website can be found here. An excerpt from the article:
The best strategy turned out to be the same that boxers, drunks and prom queens all use to fend off trouble: Remain upright.
Gold medalists Shana Martin and J.R. Salzman worked that basic tactic to perfection, spinning conservative races into gold medals.
"I didn't get a chance to show my speed," Martin said. "J.R. sat me down every time and said, 'Stay really light. I don't care how fast you go, I'll catch up.'"
Posted by Dave at 01:10 AM | Comments (0) | TrackBack
July 12, 2004
Summer Saturday For Families
This sounds like a great event with some wonderful speakers. If you can be in Massachusetts on July 30th, don't miss it! If you can't make, I'm sure they will accept any donations.
Our Sixth Annual
Summer Saturday for Families
At the Guthrie Center in Housatonic, Massachusetts
Saturday, July 31st, 2004
10:00 a.m. – 4:00 p.m.
Sponsored by The Guthrie Center and Laurel Lake Center
Overview
Families touched by HD will gather again this year (our sixth!) at The Guthrie Center for a day of good speakers, lively discussion, up-to-date information, shared interests and concerns. Where once finding any information about HD was an adventure in itself, now it’s difficult to stay abreast of it all. The day’s schedule covers topics in research, care and the lore surrounding HD. It is presented by speakers who are both professional and family caregivers. It’s a day among family and friends, both old and new. Over the years the programs have been well received! The Berkshires are a common vacation destination for folks in the Boston, New York City and Capital District areas. Join us for the day, stay for music, theater or sports in the evening or make a weekend of it!
Speakers & Topics
• Charlotte Carlson (Massachusetts)………Novels with HD
• Laura Kokoska (Connecticut)……… How Yoga Helps
• Carmen Leal (Florida)………10 Ways To Joyful Caregiving
• Carol Moskowitz (New York)………12 Tips for Living Well with HD
• LaVonne Veatch Goodman, MD (Washington State)………HDDW
Me, Yoga and A Pipedream
Laura Kokoska was battling HD when she had a chance meeting with yoga. Now she has her own studio! By popular request she’s graciously agreed to reprise the session she did last year. She’ll continue her story and lead us beginners in some introductory exercises. As yoga helps her, she knows how it can help others.
10 Ways To Be A Joyful Caregiver
Carmen Leal, well known to families touched by HD across the country and around the world, is the author of Faces of Huntington’s and Portraits of Huntington’s. She is the founder and moderator of the “HD Caregivers” online mutual support group at yahoogroups.com. Her newest book, The Twenty-third Psalm for Caregivers has just been published. A pioneer of Internet support and advocacy for families this is her second year speaking for us. More info at www.thetwentythirdpsalm.com.
12 Tips for Living Well with HD
Carol Moskowitz, a neuro nurse practitioner at Columbia/Presbyterian in New York City, asked Marjorie Guthrie what she could do to help families touched by HD. “Answer the telephone!” Marjorie replied. Thirty years later Carol’s still answering the phone. She embodies Marjorie’s legacy of care, research, education and advocacy. I asked her to select a few key tips from her experience with families over the years that may be helpful to those who have tested positive, those just beginning to struggle with HD, and those who help care for folks in the mid and more advanced stages of HD.
Charlotte’s Book Club (“Oprah! Move over!”)
Charlotte Carlson is one of those voracious readers that devour a small stack of novels…weekly! She’s come across more than a few over the years in which HD was central to the plot. I asked her to talk about some of them, to give a few “book reviews” and to suggest a short Summer Reading List. Charlotte was the key player at the HD Clinic a the former Middlesex County Hospital in Waltham, Massachusetts and the Summer Camp operated by the Mass Chapter of HDSA. She has more experience caring for folks with HD than any other speech therapist in the world. That’s a fact.
Huntington’s Disease Drug Works
LaVonne Veatch Goodman is a physician in the Seattle area. Her adult children are at-risk of HD. As Mom and doctor she is frustrated that few compounds showing promise in mice ever advance to human studies. Founding Huntington’s Disease Drug Works she is enlisting folks with HD to test a combination of one drug and five supplements already on the market. I’ve enclosed a copy of a recent article from SCIENCE that better tells her story of collaboration with her husband in launching HDDW. More info at www.hddrugworks.org.
About The Guthrie Center
Alice’s Restaurant isn’t around anymore. But, as the song says, “Alice didn’t live in a restaurant. She lived in the church nearby the restaurant…” And the old Trinity Church, where Arlo Guthrie once lived and where the saga began, has become the Guthrie Center. Founded in 1991 by Arlo, the Center brings together individuals for educational, spiritual and cultural exchange. The Center’s programs, staffed and coordinated by volunteers, cover a variety of topics in health, music, art, education and spirituality. A not-for-profit Interfaith Church Foundation, the Center meets the changing needs of the local and universal community in a tradition of service and compassion. In collaboration with the Huntington’s Disease Program at Laurel Lake Center in Lee, the Center sponsors three annual events for families touched by HD: The Scientist/Family Thanksgiving Dinner, Summer Saturday and Arlo Guthrie’s Historic Garbage Trail Walk To Massacree HD. The Center is located in the Housatonic section of Great Barrington, Massachusetts about 7 miles south of Mass Pike Exit 2 on Route 41. It’s about a 2-1/2 hour ride from both Boston and Manhattan; about 40 minutes from Albany.
Notes
I apologize to all for getting this information out so late… Special apology to Dr. Goodman…she’s wanted to come for months and I’ve been tardy getting information to her. At this mailing she has yet to confirm. If she can’t make the long journey from Washington State this year, I hope she can next. If you’d like, just call me to confirm whether or not she can make it on short notice… As always our speakers are volunteers and, like many of you, travel great distance at their own expense. I am grateful to all, speakers and attendees, for your participation. If you’ve never joined us, please do! As horrible as HD is, we try very hard to make it an upbeat informal day of information, fun and friendship. You will be quickly among friends! …We have no well-organized mailing list: please share this! My e-mail is jjpollard (at) comcast (dot) net if I can be of help. Don’t be bashful!!!
Registration
Space is limited to 65 people. Please respond as soon as possible but no later than Thursday, July 29th. Send this form to:
Jim Pollard
Laurel Lake Center
620 Laurel Street
Lee, MA 01852
Name_______________________________
Phone (_________) _____________________
Address_____________________________
E-Mail _________________________________
City_________________________________
State___________ Zip__________
Other Family Members Coming:
____________________________________
Registration is $10.00 for the first member of a family; $5.00 for each additional family member. Please make checks payable to “The Guthrie Center.” All proceeds go to support the work of The Guthrie Center.
If you have a question, please call Jim Pollard at 978-758-9610 or at the Laurel Lake Center at (413) 243-2010. Directions will be sent to all who register. Dress is weekend casual. Lunch is provided. Actually, we eat often during the day!
Posted by Dave at 07:33 AM | Comments (0) | TrackBack
July 10, 2004
"Yes" - Woodie Guthrie Book
"...one of his final statements before he died in 1967 at age 55 would be ``Yes,'' when asked whether, in spite of all he had been through, he still wanted to live."
The new Woodie Guthrie book sounds like an excellent read. A few highlights from an article on the book:
It was during those halcyon years that Cray found himself at a party in Santa Monica one night when someone pointed to a slight, wiry-haired fellow sitting on the floor and said, ``That's Woody.''
He would never see Guthrie again. Nor would he ever forget him.
It was during those halcyon years that Cray found himself at a party in Santa Monica one night when someone pointed to a slight, wiry-haired fellow sitting on the floor and said, ``That's Woody.''
He would never see Guthrie again. Nor would he ever forget him.
``It's a wonderful book, isn't it?'' says Seeger, the dean of American folk singers and, at 85, one of the greatest living authorities on Guthrie. The book creates a portrait of a far more complicated genius than many previous accounts of Guthrie's life, which have often portrayed him simply as a left-wing hillbilly musician who inexplicably had a remarkable facility with words.
He counted among his friends and acquaintances writer John Steinbeck, actor Will Geer, composer Aaron Copland, dancer Martha Graham and filmmaker John Ford.
Politically, the FBI concluded he was a communist, but he was so contemptuous of authority that the Communist Party wouldn't have him as a member.
He also lived a life shaped by unimaginable tragedy, beginning at age 6 when his older sister, Clara, died of burns suffered in a house fire.
It's that complicated portrait of her father that Guthrie's only surviving daughter, Nora, says impressed her most about Cray's book.
Posted by Dave at 08:09 AM | Comments (0) | TrackBack