Through the creation of their St. Louis Huntington's Disease Foundation,
Sandy and Alan McDonald have found a unique way
to advocate and promote care for Huntington's.
In the article below Alan tells the story.
"Hat's off" to this remarkable couple.
by Alan McDonald, Sandy's husband and Founder of the St. Louis Huntington's Disease Foundation
At first
my wife Sandy and I struggled to make sense of our lives after Huntington's,
and we tried to find the answer to "why us"?
Then our struggle turned to
supporting research and
trying to make life better for HD families.
We joined " Search for a Cure",
became active in the St. Louis HD support group,
and joined the board of the St. Louis Chapter of HDSA.
But we wanted to do more.
In 2005
we established The St. Louis Huntington's Disease Foundation.
This is a not-for-profit,
501c (3)corporation licensed in Illinois
that has partnered with Unicity/BiosLife,
an organization that manufactures a high quality omega-3 supplement.
It works like this:
100% of profits from Unicity from sales through our foundation
will be used to support family services in St. Louis, or
any other Center of Excellence designated by the purchaser.
We hope that this can be a source of long term funding
for respite care, counseling for caregivers,
educational outreach programs, and tools needed for day-to-day living with HD.
Unicity's product OmegaLife-3 was introduced in 2006
as a concentrated and pure form of Omega-3 fatty acids.
Sandy loves it because she gets 1 gram of DHA (and 2 of EPA)
in just 5 capsules a day.
Last summer
I asked Dr. Goodman to support our foundation
by including it on the HDDW list of preferred omega-3 supplements.
At her request,
Unicity agreed to 3rd party testing for purity and content.
Later analysis at Covance,
an international leader in product analysis
and clinical research (used by CHDI Inc.),
showed that OmegaLife-3 passed all tests.
After negative results were reported for TREND-HD,
the recent trial for EPA,
Dr. Goodman informed us
that she no longer supports the use of EPA for HD.
She however believes
that DHA may be beneficial.
For these reasons
she has included OmegaLife-3,
as a DHA supplement on her favorites list.
So here is why you should consider OmegaLife-3:
- It has passed high quality purity tests
- It has high doses of DHA per tablet
- It is very cost competitive: A one month supply of 1 gram per day can cost only $34.00 a month (free shipping), $10 of which is tax deductible.
- All profits from sales of OmegaLife-3 will be donated to the HD organization of your choice by giving us your preference when you order through the foundation's website.
Sandy and I now have a two-year-old granddaughter.
Due to the hereditary nature of Huntington's Disease,
she may be at risk.
We would like to leave her, and all those of her generation, a better future.
[출처] http://hddrugworks.org/dr-goodmans-blog/st-louis-foundation