September 05, 2005
Celebration of Hope Dinner
HDSA has had their annual Celebration of Hope dinner and it looks like it was a financial success. $54,000 was raised for the local HD Center of Excellence.
Posted by Dave at 07:40 AM | Comments (0) | TrackBack
February 09, 2005
HDSA Call To Arms - Genetic Discrimination
IMMEDIATE ACTION NEEDED ON GENETIC NONDISCRIMINATION ACT:
HDSA ADVOCATES! WE NEED YOUR HELP!
As you know the U.S. Senate passed the Genetic Information Nondiscrimination Act (S.1053) in November 2003 but it did not reach the floor of the House of Representatives for a vote. Instead, the legislation remained locked in committee and died at the end of the 2004 session. The Senate however views genetic discrimination as an important issue and is once again bringing a bill to the floor for a vote. This NEW bill, S.306, contains much of the original language of the Genetic Information Nondiscrimination Act.
Please contact your two US Senators today and let them know that you want their support on this important piece of legislation. Below is a sample letter that you can email or fax to each of your Senators. You can use HDSA’s internet based tool – E constituent – to write directly to your Senators. Just go to www.hdsa.org, click on “advocacy” and then “write to congress”. Select www.senate.gov and enter your zip code. The names of your Senators will appear and you can then link to their web site where they will provide instructions for emailing, faxing, mailing or phoning your message.
Please send your US Senator the following message today:
Dear Senator:
Swift passage of the new Genetic Information Nondiscrimination Act (S.306) is essential if we are to protect the rights of millions of Americans from genetic discrimination by health insurance carriers and employers.
As a registered voter, I urge you to take a leadership position in this important piece of legislation and move it quickly to the floor of the Senate for a vote. As a member of the Huntington’s Disease community, I also urge you to personally support its passage. No other piece of legislation directly addresses the issue of genetic discrimination.
I applaud the U.S. Senate for recognizing the importance of continuing the battle to enact the Genetic Information Nondiscrimination Act (S.306) and I thank you for voting for the prior bill (S.1063) which did not reach the floor of the House for a vote in 2004.
Sincerely,
Your Name
You can contact Rep. Joe Barton in the following ways:
Writing: 2109 Rayburn Bld, Washington, DC 20515
Phone: 202-225-2002
Fax: 202-225-3052
Email: go to HDSA national web site at www.hdsa.org. Click on “Advocacy” and then “Write to your Congressman.” Select www.house.gov and then follow directions to access the home page for Rep. Barton. You can email Rep. Barton directly from this site. Simply copy and paste the message above and be sure to add your name.
Time is of the essence. Please act before February 16th when Rep. Barton takes over as the Chair of the Energy and Commerce Committee. Let him know how important this issue is to you today!
Posted by Dave at 06:19 AM | Comments (0) | TrackBack
January 06, 2005
Thanks To HDDW Participants
I should have posted this sooner. Here's a thank you from Dr. LaVonne Goodman:
A PUBLIC SALUTE TO HDDW TRIAL PARTICIPANTS
As of January 1, 2005, Huntington's Disease Drug Works has thirty-five hardworking participants who are working with us in HDDW individual therapeutic trials, using a cocktail of safe agents. We salute these trailblazers as the real leaders in HDDW's patient-centered clinical trials. We also thank designated helpers, family members and local doctors; all of whom have provided support this past year.
More formal results of the first 6 months of data will be available by the end of January at www.HDdrugworks.org. We plan to update in similar many every 6 months as the trials progress. But I will share some early results with you now.
There are now more than 20 participants with four (or more) months of data.
Twelve have reached the six month mark. The majority of participants show steady improvement in most of the testing parameters that are measured in the web-interactive program. This includes both motor and the cognitive portions of the program. This steady gain has continued for first participants up to the 6 month time period of study.
Magnitude of improvement varies between individuals. The magnitude is lesser for individuals with late stage disease, but is still measurable. Any given individual may not improve on all tests, but in these cases, each individual testing pattern is consistent over time.
We realize that the patient numbers are small; and that the time interval is short. But we believe these pilot results are give ample reason to proceed and hope for the best in 2005.
LaVonne Veatch Goodman
Posted by Dave at 07:19 AM | Comments (0) | TrackBack
November 21, 2004
New Center Of Excellence
The University of South Florida is the latest HDSA Center of Excellence. From an article on this announcement:
"This is great news," said neuroscientist Juan Sanchez-Ramos, PhD, MD, who directs the HDSA Center of Excellence at USF. "The Center of Excellence will focus on offering services, comfort and hope to patients and their families while moving towards real solutions to the illness."
USF joins a select group of 21 HDSA Centers of Excellence across the country, including those at Johns Hopkins, Harvard/MGH, the University of Virginia, Emory and Baylor.
"The Huntington's Disease Society of America is committed to identifying and designating 25 HDSA Centers of Excellence by 2006," said Barbara Boyle, HDSA National Executive Director/CEO. "The addition of USF means that our HD families living throughout Florida will no longer have to travel to Atlanta, Georgia, or Birmingham, Alabama, to receive the exceptional quality of care offered by an HDSA Center of Excellence. We look forward to working with the staff at USF to make this an outstanding Center of Excellence, which we will formally dedicate in January 2005." ...
Dr. Sanchez-Ramos, who holds the Helen Ellis Endowed Chair in Neurology, is planning to study whether stem-like adult bone marrow cells administered intravenously may delay the onset of Huntington's disease in mice genetically engineered to have symptoms of the disease.
Posted by Dave at 06:04 AM | Comments (0) | TrackBack
November 16, 2004
Fall Amaryllis Sale
HDSA is selling their Amaryllis gift boxes again. As they say...money goes for a good cause!
https://www.nyic.com/hdsa/fund/amaryllis.html
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October 18, 2004
Guthrie Awards Dinner
In case you missed it, here's the rundown on HDSA's upcoming Guthrie Awards Dinner:
The Annual Guthrie Awards Dinner, is a tribute to the memories of legendary folk singer Woody Guthrie and his wife, Marjorie, principal founder of the national drive to cure Huntington's Disease (HD). The Society is proud to have the support of Nora Guthrie and Arlo Guthrie, as well as the Woody Guthrie Foundation and Archives, in planning this annual awards dinner.
The Guthrie Award Dinner raises funds for the Woody and Marjorie Guthrie Research Fund, which directly supports the HDSA Coalition for the Cure.
The 2004 awards will take place at New York City's Waldorf Astoria Hotel, on Thursday, October 21, 2004. Cocktail Reception is at 6:00 pm and the Dinner will be held at 7:00 pm.
2004 Award Recipients:
Marjorie Guthrie Leadership Award -
Novartis International AG, Robert Pearson
Harold Leventhal Award -
JP Morgan Chase, C. Mack
Guthrie Family Humanitarian Award -
Christopher O'Brien, MD, Chief Medical Officer, Prestwick Pharmaceuticals
Woody Guthrie Award -
Peter, Paul and Mary
Posted by Dave at 09:43 PM | Comments (0) | TrackBack
October 17, 2004
HDSA Holiday Cards
HDSA has holiday cards available for sale. 40% of the price goes to Huntington's Disease research.
You're going to need them anyway...you might as well help the cause at the same time. Available here.
Posted by Dave at 11:36 PM | Comments (0) | TrackBack
March 28, 2004
An Unexpected Gift
"The names of the Rev Ivy Ayris and the Rev Norman Gunn meant nothing to the Huntington's Disease Association until this month.
Then a cheque arrived for almost $400,000 from the sale of the Williamstown home owned by the pair, who died six months apart."
That is how the Herald Sun described this unexpected gift. The Huntington's Disease Association is Australia's leading HD organization.
"To receive such a generous gift is overwhelming for our small community," Mr Mims said.
Yes it is. Let's hope we hear more stories like this.
Posted by Dave at 02:12 PM | Comments (0) | TrackBack
March 27, 2004
Driving Toward a Cure
Win 2004 BMW 325 Ci Convertible or $25,000 Cash!
HDSA is having a fundraiser. Huntington's Disease research will be a winner and so can you.
The highlights from their website:
Limited to 2,500 Tickets! Remember, for every two tickets that you buy or sell for HDSA, you receive a third ticket FREE. Tickets are $100 each (three for $200).
Winners will be drawn at HDSA's National Convention on Saturday June 12, 2004 in St. Louis, MO. Tickets available here.
Posted by Dave at 08:08 PM | Comments (0) | TrackBack
March 18, 2004
Starting Your Own Support Group
Do you wish there was a Huntington's Disease support group in your area?
Have you thought about starting one but didn't know how? Here is a link with step-by-step instructions on how to get one started.
You don't need to be affiliated with any organization and you don't need any experience. You will not only help yourself, but the group will help others for years to come.
Give it a try. What have you got to lose?
Posted by Dave at 09:49 PM | Comments (0) | TrackBack
March 15, 2004
Scholarship Fund
There is a wonderful fund that has been setup to help those attend the HDSA convention that, otherwise would not be able to make it.
The fund is now called the Lou Wilkinson Memorial HD Scholarship Fund "to honor her for all of the love and support she put into not only the HDSF but everyone associated with HD."
If you have the means...please contribute. If you have the need...apply for a scholarship. Now the details, as posted by Susie on the Hunt-Dis list:
The Hunt-Dis Convention Scholarship Fund was established by the members of Hunt-Dis in 1999 to help those members who, due to financial hardships, are unable to attend a Huntington's Disease Society of America's
(HDSA) national convention.
The experience of attending a HDSA National Convention is invaluable to any family living with Huntington's Disease. It is at a national convention where they can hear, firsthand, the latest in research directly from all of the wonderful scientists and researchers who attend the convention.
The sessions are designed to help everyone from the caregiver, to those at-risk, to the person with Huntington's Disease and to our young adults and children living with HD, who have it or are at-risk for it.
Lastly, the comradeship and lasting friendships that everyone will make at a national convention is so heart-warming it just cannot be experienced to the same degree on line. It is, truly, a very rewarding experience for anyone who is able to attend.
For complete details, visit http://clix.to/HDSFwebsite.
A little more history. This is the 4th year of the HDSF (recently renamed the Lou Wilkinson HD Scholarship Fund). Last Year the HDSF committee decided to reach out to others in the HD family who may need help, and the scholarship was opened up to include the other online support groups...HD Caregivers, National Youth Alliance, JHD Caregivers, and Huntington's At Risk group, (before last year a person had to be a member of Hunt-Dis to apply). Our very first winner was for the convention in San Diego, but unfortunately, the winner was unable to attend at the last minute, and the funds were rolled over to the following year.
Each year the number of scholarships (full or partial) we have been able to award has increased. San Diego---1 full scholarship, Columbus---1 full scholarship, and 2 partials, and helped a 3rd person get a full scholarship from her local chapter, Houston---1 full scholarship and 3 partials (which actually ended up being almost full scholarships).
The Scholarship is available online http://endoflifecare.tripod.com/huntdisscholarshipfund/id29.html The deadline for submitting an application is Mon. March 15.
Completed applications should be sent to Jean Miller: jemiller at tampabay dot rr dot com
The money used to award scholarships is received through donations and/or purchase of items available on the HDSF Website. www.clix.to/hdsfwebsite
The HDSF committee are all volunteers who are dedicated to helping as many people as possible be able to attend the National Convention.
At this time the fund has about $400 less than it did last year. So far there are 5 applications for scholarships that I am aware of. The committee members work every angle conceivable to try and award every applicant at lest a partial scholarship so that we do not have to turn anyone down.
Two years ago, committee members imitated a PIE IN THE FACE *contest*. Committee members agreed that one or more would be willing to *take* a pie in the face for receiving the most votes. How do we receive votes? Through donations and purchase of items on the website. For each dollar donated or spent you get one vote. All you do is say which committee member you want to receive your votes. You can *vote* for just one committee member or divide your votes up between committee members. For the last 2 years it seems that Dave Hodgson, Jean Miller and I have been the most *popular*. And so far this year, yours truly holds the lead once again. But hey...I LOVE pies:):)
If you would like to help this very worthwhile cause, you can make a donation by sending a check made out to HDSF to: HDSF c/o Dave Hodgson 1526 Applegate Drive Naperville, Il 60565
I would encourage everyone to take a look at the HDSF website to see what is available there. Remember...every little bit helps!!!
Posted by Dave at 07:16 PM | Comments (0) | TrackBack
March 14, 2004
It's Alive! - HDDW
This is the best news I've seen in the HD community all year!
HD Drug Works (HDDW) is now up and running. If you are not familiar with Huntington's Disease Drug Works, it is an organization started last year by Dr. Lavonne Goodman and others to bring therapies to HD patients sooner.
They are now starting trials in San Diego, Austin, and Seattle. But they aren't stopping there, they hope to start up trials in more cities and you can help them by going here and getting more details.
The best part of HDDW is they are bringing therapies to HD patients that are very promising - ursodiol, cystamine, trehalose, and others.
In a very short period of time, HDDW has put together an impressive Scientific Advisory Board that includes scientists that have published studies on these potential therapies.
Go visit their beautiful website today to find out how to help, how to participate in a trial, who they are, and what they are trying to accomplish.
We need to support this organization! One day, it just might save the lives of the ones you love.
Posted by Dave at 09:35 AM | Comments (0) | TrackBack
February 09, 2004
HD2004
The HD Foundation has announced their biennial symposium for Huntington's Disease researchers - HD2004: Changes, Advances, and Good News (CAG)n. It will be held August 12-15, 2004 at the Royal Sonesta Hotel in Cambridge, MA.
Any HD symposium that includes in the name "Advances" & "Good News" has to be a good one. Let's hope it lives up to its name!
Posted by Dave at 06:59 PM | Comments (0) | TrackBack
December 09, 2003
Growing An HD Charity
There's an excellent article in a recent USA Today. A successful entrepreneur, Greg Garrett, started a successful and growing charity to help orphans in Central America. He offers this advice for other charities:
"A multitude of business-building tactics converged to get us to this point. We had to set up ORPHAN HELPERS as a 501C3 organization, so that contributions could be tax deductible. We needed to raise money, so we organized a Blue-Jean Barbeque last year and another to be held this month.
"Currently, we are putting together an Executive Advisory Board so that we have the benefit of advice, if not hands-on assistance, from individuals, such as Bill Bright (recently deceased), Jerry Falwell, and others who have built ministries.
The power of leverage
"Underlying all of these skills is the necessity of leveraging. That means applying the 10-to-one principle, securing what you need for a tenth of the cost. This trait is invaluable when launching companies, and essential when creating a charity.
"In our early days, we needed everything: office space, Internet access, and a budget for getting the word out, to say nothing of supplies for the orphanages. Our solution was to solicit donations, largely from people and companies with whom I have worked over the years.
"A client offered an office and Internet connection; another friend provided storage space. Items for the orphanages poured in from companies and individuals. As for marketing, a printer with whom I do business donated brochures. The local cable TV on which my company advertises provided a 30-minute interview as a public service to promote our Christmas toy drive. A volunteer created our Web site; a local production company helped us put together a promotional video.
A final word
"Leverage, in other words, got the momentum going and enabled ORPHAN HELPERS to take on a life of its own. The message for entrepreneurs hoping to do the same is clear: Hold fast to your dream, but don't ignore your valuable entrepreneurial skills when turning charitable dreams into reality. Your God-given business-building savvy is the key to creating organizations that are in the business of changing lives."
Are you taking notes?
Posted by Dave at 07:01 PM | Comments (0) | TrackBack
December 06, 2003
HD Drug Works Now Online
The Huntington's Disease Drug Works (HDDW) now has their own website online. Of all the Huntington's Disease organizations, their website is one of the best looking and easiest to navigate. I definitely recommend you stop by and visit. Their website address is http://www.hddrugworks.org. If you're not familiar with HDDW...
it is an organization created to test existing medications and supplements to find those that will slow (or stop) the progression of Huntington's Disease and to determine the proper dosages. This work is supplemental to the great work that is being done by the Huntington's Study Group (HSG) and others.
This program has the very real potential of saving lives and I highly support their goals. Be sure to visit their website and learn more about this organization and how you can help.
Posted by Dave at 09:36 AM | Comments (1) | TrackBack
November 28, 2003
HDSA Care Spending
I was surprised. Until I broke down the numbers, I didn't realize how much of my donations to HDSA actually went to care-related programs.
Earlier this year I posted a report on HDSA and how it spends its money. Fortunately for the HD community, HDSA proved to be very responsible with its money. However, there are some in the community who have questions on how they split their money between care-related programs and research programs.
Recently, I've had a chance to go over their IRS records for 2002 (last year available) and I can now provide a greater breakdown on how the program money is spent.
Funding for charities comes from grants and donations. Generally speaking, a charity must follow the rules of any grant they receive. They don't have a choice as to where the money is spent. Donations generally come without any significant strings attached.
When you look at total program expenditures (which combines grants and donations) 46% of HDSA's money goes to research and 54% goes to care.
However, when you remove the grant money and only look at how they divy up donations you get a very different picture. HDSA allocates 79.5% of donation's to care-related programs and 20.5% of donations to research programs.
This should make those who prefer care spending very happy! Further, if you add in the grant money that goes to care programs HDSA spends more on care-related programs than they receive in total donations (which is, of course, excluding grants).
For those who like looking at the numbers, here they are:
Program Spending
$1,723,513 Counseling & Referral Services
$ 606,937 Publications, Newsletters
$1,098,288 Chapters (Workshops, Seminars, Symposiums, etc.)
=======
$3,428,738 Total Care-Related Programs ($827,500 from Grants)
$2,912,743 Research Programs ($2,241,668 from grants)
=======
$6,341,481 Total Program Expenditures
Program Revenue By Type
Grants - $3,069,168
Donations - $3,272,313
Donation Expenditure By Category
Research Programs - $671,075 (20.5% of donations)
Care-Related Programs - $2,444,813 (79.5% of donations)
Posted by Dave at 09:54 PM | Comments (0) | TrackBack
November 19, 2003
A Huntington's Disease Story
The fine folks at the Generations of Hope Ranch Camp have posted a fascinating story of Huntington's disease that is all to familiar to them. The story will sound familiar to many others.
Read the story here and you'll understand why they are so passionate about assisting other families dealing with Huntington's Disease. Visit the bottom of this page to learn how you can help them help others.
Posted by Dave at 07:50 PM | Comments (0) | TrackBack
November 13, 2003
Doctor's Resource Update
Jerry, the driving force behind HD Lighthouse has put thousands of hours into helping those with Huntington's Disease maintain their heath. It would hard to understate his importance to the HD community.
He's launched a new website, mentioned here yesterday, to inform doctors on treatment options for Huntington's Disease. The focus isn't on medicating symptoms, but on proactive treatment. Perhaps the only HD-related website with that focus.
It'll be interesting to follow as the website expands over time.
Posted by Dave at 08:16 PM | Comments (0) | TrackBack
November 12, 2003
HD Resource For Doctors
Not much time tonight but visit http://huntington-disease-treatment-now.org/. (Via HD Lighthouse)
I'll post more on this later.
Posted by Dave at 10:11 PM | Comments (0) | TrackBack
October 26, 2003
Therapy Dogs Helping HD Patients
The Waynesboro Record Herald has a wonderful article on the value of therapy dogs. Therapy Dogs, Inc. which trains these animals was founded in 1990 and now has over 4000 members. The therapy dogs provide pure love to those who need it and they can be especially beneficial to those with Huntington's Disease. The article has this example:
"Among those who have been reached by Callie is a 34-year-old woman suffering from Huntington's Chorea, an inherited neurological disease.
"She has seizures and can thrash around. When that happens, Callie can calm her down," said Heater. "In fact, we have been called to come to the nursing home to help her get calm."
"Callie puts herself tightly against the woman, who holds the dog and eventually falls asleep."
Fortunately, there is an organization that is working to match therapy dogs with Huntington's Disease patients across the United States - Generations of Hope. They are working with the various centers around the country to provide this valuable service. You can read more about this on their website (scroll to the bottom).
Some complain (rightfully so) that there isn't enough being done to provide care to those with Huntington's Disease. Generation's of Hope is doing something about it. If you'd like to help Generation's of Hope help others you can visit this page for information on how to donate.
Posted by Dave at 08:35 AM | Comments (0) | TrackBack
October 08, 2003
Therapy Dogs For HD
There is a great young HD organization that is working very hard to improve support for families dealing with Huntington's Disease. In addition to starting a retreat for famies and starting up an 800-number support line they are now working to provide Therapy Dogs for those with Huntington's. Visit here and scroll to the bottom to read more about their latest program.
Be sure to tell your friends about Generations of Hope. They need all the support they can get. Visit here to make a donation.
Posted by Dave at 06:41 PM | Comments (0) | TrackBack
October 07, 2003
HDDW Update
HD Lighthouse has an update on HD Drug Works, the organization started by Dr. LaVonne Goodman to speed up the process of bringing effective therapies to Huntington's Disease patients.
Here are some of the highlights:
* Thanking Jerry (HD Lighthouse) for all his support
* They will have their own website up later this month
* Their work will be called "HDDW Therapeutic Drug Trials"
* LaVonne is no longer the HDSA Northwest Chapter President
* HDDW is not competing with any other HD organization
* They have three scientific advisors on board so far
Visit HD Lighthouse and read all the details for yourself. HDDW looks to be another great addition to the pantheon of Huntington's Disease organizations.
Posted by Dave at 08:30 PM | Comments (0) | TrackBack
September 28, 2003
HD Quilt - Phase II
This is from Marie Nemec:
I have located two sisters here in Colorado, Daleen and Ellen, who own a quilt shop in Rangely, CO in NE Colorado, who are willing to help put another quilt together!
All the information on how to submit a square, what is needed, etc. is on this website: http://huntingtondisease.tripod.com/hdmemorialquilt/
If you have any questions, feel free to contact me (Marie Nemec) at "rmnemec (at) JUNO (dot) COM".
Please consider making a square for someone you love who is affected in some way by HD. There are some experienced quilters, including myself, who have been known to make a square for someone who is sewing challenged. If you need help, let me know, and I will either make a square for you, or find someone who will.
There are still some squares left over which weren't sewn into the Phase I quilts. Debbie Hart will be sending them to me once they're in order, with the accompanying biographies. So ... it's official now. Phase II has been formally announced, and we look forward to lots of participation. It takes about +/- 100 squares to make a large quilt.
Deadline will be February 14, 2004 to allow enough time for the gals at Crafty Quilters and me to piece together the squares, for them to Machine Quilt the quilt, and then for me to bind it. The quilt will have to be completed by the time that Charlotte and I start the Bike For The Cure ride for 2004.
Please make sure that no buttons or decorative items are sewn to your square. They would have to be removed for the machine quilting process.
I will give a free "Trek Across Texas" T-shirt and two scrunchies to the person who submits the first quilt square to me! Hopefully that is an incentive!
With love and excitement for the start of Phase II,
Marie Nemec
Posted by Dave at 07:56 PM | Comments (0) | TrackBack
September 18, 2003
HDSA Celebration of Hope
Last night was the 5th Annual HDSA Celebration of Hope dinner in Denver. All of the proceeds raised are going to the HDSA Center of Excellence at the Colorado Neurological Institute (CNI). CNI, a charitable non-profit, is the largest comprehensive neurological center in the Rocky Mountain region. The HDSA Center of Excellence is headed by a woman who may very well be the best Huntingtons Disease specialist in the country Dr. Lauren Seeberger.
This HDSA Center of Excellence is such a wonderful resource for the HD community. They take a multi-discipline approach to the treatment of HD. The team includes neurologists, psychologists, occupational therapists, physical therapists, speech therapists, a genetic counselor, and a licensed clinical social worker. They provide education and support to long-term care and assisted-living facilities, they staff an HD Helpline, provide professionals to help run two Colorado support groups, provide travel assistance to HD patients with financial difficulties and they participate in HD studies. There is now 17 HDSA Centers of Excellence with the goal of increasing that to 25 centers within the next three years.
Having seen the results first hand, I cannot overstate how much better the quality of care and support is to HD families due to the integration of care and research. The benefits of Marjorie Guthries vision (which was codified in CCHDs charter) of education, assistance, and research are evident today in HDSAs Centers of Excellence.
The fundraiser last night was a huge success with a large attendance, a huge silent auction, and a very powerful presentation all designed to raise as much money as possible for the support of HD families. Dr. Seebergers very eloquent speech was directed to the large donors. She did such a wonderful job explaining that HD is a combination of the movement of Parkinsons (only worse) that has afflicted celebrities such as Michael J. Fox, the fading mental capabilities of Alzheimers, and for some the debilitating emotional effects that are felt by those with bi-polar disease. Very well done. You could almost hear those purse strings loosening.
The program included the playing of a new PSA for HD that has been nominated for a prestigious advertising award. It was excellent! The most powerful element of the evening was readings from the HDSA Generation 2000 Journal of Hope. These pieces of HD expressions and memorials were read by a rotating group of HDSA members that included three young girls who did a marvelous job. This was followed by a live performance by the singing group MULTI of a new original song about HD called Tina Marie, performed in memory of Tina Marie Nieto Herrera. During the performance a video of pHDs at the HDSA Center of Excellence was played (this was with their permission). When the song was finished, the singers turned to face the screen and the rest of video was played in silence. I heard sniffles from throughout the room.
Wish you all could have been there, what an evening!
Posted by Dave at 10:46 AM | Comments (0) | TrackBack
September 13, 2003
Ebay Fundraiser for HD
If you're a fan of quilting and you would like to support HD, there is a beautiful quilt for being auctioned on Ebay. Here's the description and a picture (Link):
This beautifully crafted free-motion quilt is constructed in a Simple Hearts Design. The quilting utilizes primarily small prints accented with both solid colors and large floral prints from a Victorian palette of mauve, blue, celadon, and maize yellow. The double/queen quilt is 62IN wide by 74In long but can also be used for a twin bed. The Huntington's Disease Society of America - Wisconsin Chapter (HDSA-WI), a non-profit health organization, is offering this quilt for auction. All proceeds from the sale will go to HDSA-WI. Please see www.hdsa-wi.org for more information on HDSA-WI or Huntington's Disease. Thank you for your interest.
Hat tip to the Hunt-Dis email list on this auction.
Posted by Dave at 11:27 AM | Comments (1) | TrackBack
September 12, 2003
Movement Disorder Symposium
For those who will be around the Denver, CO area on September 20th the 10th bi-annual Movement Disorder Symposium is being held. This event includes special guests, a silent auction, lunch and break out sections - including one specifically for Huntington's Disease.
The event is being held from 8:30am - 3:30pm at the Mile Hi Church (9079 W. Alameda Ave.) in Lakewood, CO. I can highly recommend this event!
The schedule is available here and the registration form is available here. See you there!
Posted by Dave at 07:33 PM | Comments (0) | TrackBack
September 07, 2003
HDDW Organizational Meeting
This was posted on HD Lighthouse...
The HDDW organizational meeting details:
September 20, 2003 1:00pm
Radisson Inn
1085 East El Camino Real
Sunnyvale, California
Hotel Reservation Information:
Radisson Inn
1-888-254-0637
Rooms are $69/night.
I'll be at a symposium so I won't be there, but I urge anyone who can make it to attend. You can get all the details (and sign up to volunteer) Here.
Posted by Dave at 10:16 AM | Comments (0) | TrackBack
September 06, 2003
In The Beginning...
We've come so far in such a short period of time. Thirty-six years ago folk singer Woodie Guthrie died from Huntington's Disease. At that time there was very little research being done on Huntington's Disease and very little information available to doctors. Woodie's widow, Marjorie Guthrie, decided to tackle this problem and she started the 'Committee to Combat Huntington's Disease' (CCHD).
This was their statement of purpose:
PURPOSES OF THE CCHD, INC.
The Committee's Charter contains a statement of the purposes for which the Committee was organized. Briefly, these purposes are:
Educational. To collect information about all aspects of Huntington's disease and distribute to interested individuals, "for the purpose of increasing public awareness;"
Assistance. "To assist those afflicted with Huntington's disease and their families in meeting the social, economic, and emotional problems resulting from such affliction;"
Financial. The Committee will raise funds to help support "the advancement of medical science and research, especially in the prevention, diagnosis, treatment and cure of Huntington's disease and related ailments."
Marjorie, with the help of many others started raising money and raising awareness. In 1983, shortly after Marjorie passed away, CCHD changed its name to the Huntington's Disease Foundation of America (HDFA). In 1986, HDFA and the National Huntington's Disease Association of American (NHDA) merged to form what is known today as the Huntington's Disease Association of American (HDSA).
Today, with precious little money, HDSA continues to provide the educational services, support services, and research funding that was originally envisioned by a small group of people in 1967.
If you'd like to read more about CCHD you can visit this page at CureHD.com which has several newsletters from the earliest days of the organization. It's very interesting reading!
Posted by Dave at 08:45 AM | Comments (0) | TrackBack
September 04, 2003
MIDNIGHT TRAIN TO GEORGIA
This comes from Dr. LaVonne Goodman:
With some money in the bank, HUNTINGTONS DISEASE DRUG WORKS (HDDW) is now officially ready to begin the work of the TREATMENT NOW initiative for those affected by this disease. HDDW is an official non-profit organization founded by Nathan and LaVonne Veatch Goodman. This Huntingtons organization will be the vehicle (our Midnight Train To Georgia) to speed the testing for individual HD patients with drugs available now. We have taken this independent path because at present our patient organizations do not have any funding mechanism for the human studies (described below) proposed by Treatment Now. If any of the studied agents have benefit, we have a fighting chance for bringing treatments to people affected by HD in THIS generation now.
We are thankful and have the greatest of respect and admiration for researchers who have brought the scientific and medical knowledge of Huntingtons disease to the stage that drug testing is a possibility. We also are thankful and have the greatest of respect and admiration for the Huntingtons organizations; Huntingtons Disease Society of America founded by Marjorie Guthrie, the Hereditary Disease Foundation founded by the Wexler family, and the Huntington Study Group scientists, and physicians who coordinate efforts country-wide. It is our intent that the works of HDDW augment the efforts of other HD organizations.
The HDDW Huntingtons Train will be driven by those who have the most at stake in this venture; Huntingtons families. Family zeal and passion will fuel this train. For sure, well need expert directions from the best basic scientists, statisticians, medicinal chemists, drug companies we can find. To get all the way to Georgia we need to be on the right track; we need all the expert help we can get.
THE N OF 1 TRIAL DESIGN
It is well known that many individuals with Huntingtons disease, and many at risk are already taking the drugs that HDDW plans to test. This is done without the benefit of clinical guidelines for either the patient or the physician. Taking this into account, we have chosen a study design that has the goal to study the individual persons response to drug treatment; and in so doing will also provide information for best medical decision making for the treating physician. In the scientific lingo, this is call n of 1 design. This means that the individual response or the most effective treatment for the INDIVIDUAL person with Huntingtons disease is the answer sought.
HDDW will test ONLY already available and approved drugs that have both underlying scientific foundation for potential benefit and whose risks and toxicities have already been extensively studied. Such drugs will likely include creatine, ursodiol, cysteamine, minocycline, etc. We will administer test drugs to each participant in a sequential crossover study design. For example, participant 1 will receive drug A for 6 months (or more), then drug B for the next six months, then drug C (which might be a combination of 2 drugs) for the following 6 months and so on. This will proceed until the best drug or combination for each participant is found. Other participants would have drugs given in a different and random sequence.
Drugs that dont benefit will be discarded, so the study can adapt to positive results. And can accommodate other drugs as they become available. These studies will likely take months to years to complete, but all participants will get the drugs that have a best chance to work.
In these n of 1studies, the individual who has had previous disease progression measurement such as that performed at Centers of Excellence, will serve as their own control. Drug benefit will be measured by their own personal yardstick. This will eliminate the complicating factors of (1) known variable disease progression rate among different individuals with HD, and (2) probable variable response to single drug among different HD individuals. Individual response to individual treatment is the primary goal.
Disease progression rate post-drug will be compared to the pre-drug rate as the best measure of individual response for each time period. Each drug tested in the individual is graded for benefit. The individual then gets the drug that works best for them.
The benefit of this study design is that study patients taken as a group would over time be receiving best standard care onto which other drugs can later be added. Further if there are enough numbers of patients per drug or combination of drugs, our statisticians may be able to define the best care for the population of HD patients as a whole. We will design these studies from the onset so that all of us on this train will have a seat.
Posted by Dave at 06:42 PM | Comments (2) | TrackBack
September 02, 2003
Defending HDSA
From time to time I see or hear negative comments about HDSA. While no organization is perfect, I believe that in some instances HDSA gets a bad rap.
Some points before I continue...
a) The needs of the HD community are far greater than the services that are being provided. More needs to be done.
b) I do donate money and time to HDSA-related activities, otherwise I have no affiliation. If I think they're wasting my money I'll be the first to say so.
c) Reasonable people with different viewpoints can come to equally reasonable different opinions.
d) HDSA is not perfect. As an organization made up of imperfect humans, they too will make mistakes.
Now on with the show...
It does not follow that because much more needs to be done in the HD community that shortage of services is the fault of HDSA. It is easy to overlook just how little money HDSA has to work with each year. They are limited by the amount of money they have (just like the rest of us). So the question should be asked is..."How well do they use the money they have?"
1) "They spend too much on fancy printing." I've heard this complaint more than once and I'm afraid this one falls under the category of 'necessary evil'. In some cases a certain weight paper or type of stock is required for durability or to prevent problems such as 'ink bleed through'.
In the case of "The Marker" and other fundraising related materials it's a necessary evil. You'll notice the same type of printing is done for other charities also. This choice isn't due to extravagance, it's do to the realities of raising money for non-profits. The appearance of these materials has a huge effect on donations. When charities go 'cheap' on fundraising materials they lose a lot more in donations than what they save on printing. Sad but true.
2) "They've run out stock on..., it should be managed better." It can be due to a screw up as staffing turnover is often high in non-profits. However, this is a common issue in many organizations, especially those on tight budgets. Those who have regularly purchased printing probably know why. One of the biggest expenses is the 'setup' costs of printing. The printer's costs of creating the printing plates and setting up the press must be covered even for small runs. A larger print run allows an organization to save money by spreading out this cost. So orders are placed when stocks run low and sometimes they run out before the new stuff is back from the printers. You can't always time these perfectly. I know, I've tried.
3) "They spend too much on office staff (overhead)." They are one of the most efficient charities when it comes to using the amount that is spent for their given purpose. They are the only charity of its type to get the a+ rating from the American Institute of Philanthropy (AIP). You can read more on this here: http://www.huntingtons.info/MT/archives/000030.html.
4) "They should spend more on supporting families/research!" (See 'a' above) HDSA's records show that they don't hoard money. They spend the money as it comes in. They already spend a very low amount of money on overhead so the only other place they can 'get' money is to take it from funds being spent on research and use it on support programs or vice-versa.
For some this is a 'religious' argument where they feel HDSA should spend ALL available funds on either research or support, not both. I'll disappoint both extremes by saying that money needs to be spent on both. While some would say that HDSA shouldn't spend any money on research, I would respond by saying that it would be foolish not to. The money spent on research will save many times that amount in support costs later. HDSA spends far less than what many people think on research. Currently they are funding only 10 small and carefully selected studies a year.
For those who say that all the money should be spent on research...As much as we need to find effective treatments for HD, HDSA is providing an important and necessary role in support of HD families that is not being filled by the government or other organization. Their periodicals such as the Physician's Guide have been an invaluable resource. For many the support meetings have been life saving.
IF YOU WANT MORE MONEY SPENT ON...
...support Services, there are a number of things you can do.
1) Donate to/fundraise for the local HDSA group, instead of the national group. All this will go to support, not research.
2) Support other organizations that focus on care such as Generations of Hope.
3) Donate your time to support others.
4) Lobby your elected officials and let them know about the needs of our community. The government spends 100's of times more than all the HD groups combined on supporting HD families.
...research.
1) Donate to research organizations such as Hereditary Disease Foundation and the Huntington's Disease Drug Works.
2) Lobby your elected officials (see above).
I do believe we need to be cautious and careful in our criticism of support organizations. If our focus becomes unbalanced and we spend too much on what we don't like without acknowledging the good it can lead to lower donations...which ultimately means less help for those who need it.
A final thought for perspective...One company (Citgo) gave more money to the Muscular Dystrophy Telethon last weekend than HDSA had to spend for all of last year. The fire fighters donation last weekend equals the amount of money HDSA had to spend for the last three years combined.
Posted by Dave at 06:07 PM | Comments (0) | TrackBack
August 29, 2003
Generations Of Hope Approved
I just got word from Traci of the 'Generations of Hope Ranch Camp' that they have received approval on their 501(c)(3). That means that all donations to this worthy cause are fully tax deductable.
If you are not familiar with the Ranch Camp you can read past articles here. This organization is going to provide two important services to the HD community. First, they are establishing a camp where families dealing with Huntington's Disease can get a break and be in an understanding and accepting environment. Second, they are setting up a support line where HD families can call when they just need somebody to talk to.
Both of these things are needed in the HD community. You can contribute by visiting this page on their website.
Posted by Dave at 09:29 AM | Comments (0) | TrackBack
August 18, 2003
World Congress On HD Postponed
This bites...
I checked in this morning to see what the news was out of the World Congress on Huntington's Disease. It was scheduled for last weekend in Toronto. After nearly being cancelled or moved earlier in the year due to the SARS panic, the convention was finally killed at the last minute due to the regional power outages.
The World Congress is comprised of HD organizations from around the world. Organizations involved include HDSA, Hereditary Disease Foundation and the Huntington Study Group. Scheduled speakers included such notables as Dr. Nancy Wexler, Dr. Alice Wexler, and Dr. Gillian Bates. The topics were to wide ranging and presenters were to be available to discuss 92 different study abstracts.
There's no word on when the event will be rescheduled.
Posted by Dave at 02:02 PM | Comments (0) | TrackBack
August 14, 2003
Generations Of Hope Camp
The fine folks at the Generations Of Hope Ranch Camp have added pictures of the proposed camp.
They are also working on an exciting fundraiser for later in the year. Keep tuned for details.
You can see the camp photos here.
Posted by Dave at 07:42 PM | Comments (0) | TrackBack
August 09, 2003
HDDW Update
HD Lighthouse has posted the August update for the Huntington's Disease Drug Works (HDDW).
Dr. Goodman's update contains a wealth of information on HDDW and it's role within the HD community.
This is a Must Read Article. You can check it out here.
Posted by Dave at 09:01 AM | Comments (0) | TrackBack
August 04, 2003
HDSA Guthrie Awards
HDSA has announced their annual Guthrie Awards Dinner which will be held this year at the Waldorf-Astoria Hotel in New York on October 2, 2003.
Honorees include John Mellencamp, Columbia University's Dr. Stanley Fahn, Amarin's CEO Rick Stewart, and the San Diego Charger's CEO Dean Spanos & wife Susie Spanos. (I hope the Spanos bring along Bill & Romana Johnston.)
For the rest of the information here's the press release:
NEW YORK, Aug. 4 - The legacy of folksinger Woody Guthrie and his wife Marjorie will be commemorated at the Huntington's Disease Society of America's (HDSA) seventh annual Guthrie Awards Dinner. The gala will be held at the Waldorf Astoria Hotel on Thursday, October 2, 2003, beginning with a cocktail reception at 6:00 p.m.
This year's honorees are John Mellencamp, world-renowned singer, songwriter and musician, who will receive the Woody Guthrie Award for his embodiment of Woody Guthrie's ideals; Stanley Fahn, M.D., noted Professor of Neurology and Chief of the Movement Disorders Division at Columbia University, who will receive the Guthrie Family Humanitarian Award for his compassion and concern for the care and support of people with Huntington's Disease; Rick Stewart, Chief Executive Officer of Amarin Corporation plc, who will receive the Marjorie Guthrie Leadership Award for outstanding humanitarianism in the corporate world; and Dean Spanos, President and CEO of the San Diego Chargers and his philanthropist wife Susie Spanos, who will receive the Harold Leventhal Community Service Award for their commitment to raising awareness about Huntington's Disease. Judy Collins, celebrated folk artist, will reprise her role as Mistress of Ceremonies.
When Woody Guthrie lost his battle with Huntington's Disease (HD) in 1967, his wife, Marjorie, founded what is now known as the Huntington's Disease Society of America with a mission to promote and support research to find a cure for HD, help those affected by the disease and their families and educate the public and healthcare professionals about HD.
Huntington's Disease is an inherited, degenerative brain disorder that results in the progressive loss of control of both the mind and the body. Each child of an affected parent has a 50-50 chance of inheriting this deadly disease. Presently, there is no effective treatment or cure for HD, but with the help of HDSA, there is hope. The Huntington's Disease Society of America is committed to making this the last generation with HD.
All proceeds from the Guthrie Awards Dinner benefit the Woody and Marjorie Guthrie Research Fund to find a cure for Huntington's Disease. For more information or to purchase tickets/tables, please contact the Huntington's Disease Society of America at 800-345-HDSA.
Posted by Dave at 09:22 AM | Comments (0) | TrackBack
July 28, 2003
Hold The Mayo - HD Researcher's Study Golf
The world famous Mayo Clinic has been involved in Huntington's Disease research for several years. Their contributions to the PHAROS project (an HD observational study) and other work has been valuable. However, there has been precious few published HD studies coming out of the Mayo Clinic in the last few years.
We may now know one of the reasons. It appears that the Mayo Clinic has been using Huntington's Disease researchers to investigate why golfers have the 'yips'. The Mayo Clinic has been studying golfing for years and this last week ran a golfing tournament in order to further their research on why golfers blow putts. No, I am not making this up.
So at a time when we are in desperate need for more HD research. When other less prestigious research organizations are making surprising gains in the search for a cure, the Mayo clinic is taking the time of Huntington's (and Parkinson's also) researchers to study movement in golfing. Even if none of the money is directly or indirectly coming from HDSA, HDF, or from some other HD funding it still pulls the time and energy of HD experts away from the important research we need in the HD community.
This is outrageous and why isn't anybody in the HD community complaining about this? Is part of our money paying the researchers salaries?
Posted by Dave at 12:25 PM | Comments (3) | TrackBack
July 26, 2003
Generations of Hope Ranch Camp Update
Some great new from the fine people at the Generation's of Hope Ranch Camp. They will be starting a support phone center specifically for families dealing with Huntington's Disease. Once this is up and running, HD families will finally have an 800 number they call to get support with HD issues.
For those who haven't didn't catch the earlier article on the camp, it is a non-profit operation where families with Huntington's Disease can relax and get some emotional healing. The camp is located in area called the "Little Switzerland of Oregon" - Wallowa County. Patterned after a similar camp in New Zealand, this is a great resource for our community!
For more information on this wonderful organization be sure to visit their website. If you would like to help out this wonderful cause, they are now selling another beautiful photograph. This 8x10 woodland scene was taken near the camp and is matted and framed in barn wood by a local wood worker. Click here for more information on this beautiful numbered and signed print.
Posted by Dave at 08:29 AM | Comments (0) | TrackBack
July 18, 2003
How Is HDSA Really Spending The Money?
When it comes to charities, there is no charity that doesnt have its critics. Many are very badly run with most of the money going to the management. Others just suffer from poor management. Some deliberately release false press releases with rigged study data to attract attention and fund raising. But most charities try very hard to do the best they can with their limited resources.
The Huntingtons Disease Society of America (HDSA) is the most prominent and visible Huntingtons Disease organization in North America. We all wish HDSA and other HD organizations would do more. Some wish they would spend more on research, others wish they would spend more on supporting HD families and most want more spending on both priorities. We all know that there isnt enough money being spent on Huntingtons Disease, but how well is HDSA spending the money they do have?
Here is what the two top charity watchdogs have to say about HDSA:
The American Institute of Philanthropy (AIP), in its tri-annual study of top charities gives HDSA their top rating A+. In fact they are the only health charity to get that score. By the AIPs standards, a charity should spend at least 60% of the money on charitable programs. HDSA spends 84% of its money on its charitable programs. Another AIP measure is how much the charity spends to raise money. The AIP standard is that no more than $35 should be spent for every $100 raised. HDSA only spends $13 for every $100 that it raises. Another thing that the AIP looks at is whether the charity is holding on to too much money and not spending it. The AIP standard is that a charity should not hold assets that are worth more than three years of fundraising. (What good is a charity that doesnt actually spend its money?) Any charity that has over five years of assets is given an F and considered to not need funds. HDSA, on average, only has about 12 weeks worth of assets. Way under the AIPs three-year limit. These are the reasons HDSA gets the very rare A+ rating.
Another charity watchdog group is the Charity Navigator. Founded in 2001, they measure charities differently than the AIP. Theyve developed a more complicated system for measuring charities that tries to measure the quality of the management of the organization. This process can be very informative, but the resulting rating may be misleading to some who dont understand the process that was used to develop the ratings. The Charity Navigator gives HDSA a three-star rating (four-star is the highest) which means: Exceeds or meets industry standards and performs as well as or better than most charities in its Cause. A very good rating. In fact, they barely missed getting a four-star rating.
In my opinion, they use a formula that too heavily weights the fundraising efficiency (without going into detail, they essentially double-weight it compared to other expenses). HDSA only spends 3 percentage points more on fundraising than what Charity Navigator considers ideal. They will give a charity four-stars if they spend at least 75% of their money on program expenses, this is arguably the most important category. This number represents the percentage of money being spent for the purpose of the charity and that number should be as high as possible. HDSA spends much more than the 75% four-star standard, they spend 84% on program expenses! Much higher than what is considered a four-star performance.
Charity experts agree, HDSA is a well-run organization. So why does it seem that not enough money is being spent on research and support services? The answer is simple: They just dont have much money. What money HDSA has, they spend very well. Last year they only had a little over $6 million to spend on programs. It varies but they spend about half their money on support services and half on research.
To give you an example of how little money that really is consider thisIf they spent their entire program budget on support services that would only be about $63,000 more per state. A drop in the bucket compared to the need. This is why the HD community must rely so heavily on state and federal programs for support and on pharmaceutical and genetic companies for research.
No organization is perfect, but HDSA is accomplishing a lot with the very little money they have. If we want HDSA to do more, the HD community will need to step up and help them raise awareness for Huntingtons Disease and provide support for their fundraising programs. Just as we need their help, they need our help. We are in this together.
Posted by Dave at 10:51 AM | Comments (0) | TrackBack
July 17, 2003
HDDW
Since this blog started, I've wanted to write about HDDW - Huntington's Disease Drug Works. Dissatisfied with how current HD research was progressing and not wanting to stand on the sidelines, the founders started the HDDW to create a process that would bring help to HD families sooner.
HDDW has (naturally) evolved as theyve been establishing it. There have been some name changes (HDDR, HDDW, Treatment Now Initiative), slight goal changes and organizational changes (attempting to become a part of HDSA, pursuing non-profit status). Until now, the only source of information has been some articles on HD Lighthouse. It looks like its going to be easier to follow their progress as they have just announced that they are developing their own website.
For those who are unfamiliar with HDDW, their goal is to speed up the research process and improve the dissemination of study information. They want to create a process where a follow-up confirmation study is done quickly whenever there are encouraging animal studies. They also want to develop a process where potential treatments are tried on humans sooner. This is all being designed to bring help to those with HD sooner than it might otherwise happen.
HDDW is encouraged about animal studies that have shown certain treatments to be potentially beneficial to humans. These treatments include EPA (fish oil), minocycline, coQ10, creatine, cystamine, TUDCA and an unnamed drug.
For the latest on HDDW be sure to read this article on HD Lighthouse. At the end of the article there is a form you can fill out if you want to become involved with their organization.
Posted by Dave at 09:11 AM | Comments (0) | TrackBack
July 05, 2003
Generations of Hope Ranch Camp
Check out this letter from Traci L. Rorden at the HD Lighthouse. She is setting up a camp for families with Huntington's Disease. This camp will offer horseback riding, fishing and other activities for the family. The camp is located in beautiful Wallowa County, Oregon.
What a wonderful idea!
A good friend of mine in the HD family, who has worked in an equestrian camp, speaks very highly on the emotional healing effects of horses. This is a worthwhile service that fills a very real need in our community. If you would like to support this effort visit this page where you can purchase a beautiful photograph taken by Traci. The sales from this limited edition photograph will all go toward the Generation's of Hope Ranch.
Some of the links on their website don't work yet. Just follow the 'Next Page' link at the bottom of each page and you'll make your way through their site.