In 2004 I wrote a letter called "A Heartbreaking Journey" that describes
the affects of HD on families that I used [and still use] to attach to any letters I write to my state representatives when
asking for their support to legislation issues I feel are important for all HD families. If you would like to read this
letter, or use it, please click here: A Heart Breaking Journey - Jean Miller November 2004
Jean Miller's Letter to Support H.R.6259, The Improved Social Security and Medicare Access for Persons with Huntington’s Disease
Act of 2008 introduced June 12, 2008 by Representative Bob Filner [CA-51]. |
This information
is a link of the Huntington's
Disease Links website.
Advocacy/Donations/Press
Instructions:
Click on the underlined subject, below, to
be taken to information.
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Donation - HD Research
Huntington's Disease Society of America
505 Eigth Avenue - Suite 902
New York, NY 10018
Phone: 212-242-1968
Toll free: 1-800-345-4372
Fax: 212-239-3430
Find
out more about the ways you can donate to HDSA's programs and services. Donations can be earmarked for one of the funds
shown on this HDSA website or you can designate your donation strictly for Research or Family Services.
Personal Note:
The HDSA also established the
Kelly E. Miller Juvenile HD Fund. Monies
donated to this fund supports the HDSA Centers of Excellence and other Care and Educational Programs Donations can be made
to the HDSA with your donation marked for the Kelly E. Miller Juvenile HD Fund.
Hereditary Disease Foundation
The HDF appreciates
donations towards on Huntington's Diesease. 100% of every public donation will fund specific sscientific research.
The Hereditary Disease Foundation
2444 Wilshire Boulevard, #511
Santa Monica, CA. 90403
Phone: (310) 575-9656
Donations Through Employers
If you want to know more about how to give to Community Health Charities or include us in your employee giving campaign - visit the
Employee
Giving Campaigns section of this site. If you would like to find how Community Health Charities works in your community, visit
our Local Offices.
Local offices are affiliates of Community Health Charities that work within the communit to create
stragic alliances and local work place giving campaigns. These affiliates link employees with their local health charities
and services. Please
contact our State Affiliates to find out how Community Health Charities works in your community or use the state listing:
HDSA has a new Community Health Charities and Combined
Federal Campaign number: 11238. Please be sure to designate "contributions to the Huntington's Disease Society of
Amerca".
Check with your United Way local office to see if Huntington's
Disease Society
is listed and request your employee designated your contributions to United Way to the code provided for HD.
For example:
4221 Florida code
0526 New York is for HDSA
050038 Texas code for HDSA
5679 code for HDSA WA Chapter
6009 Virginia/DC code for HDSA |
Ways You Can Advocate for HD < click
HDSA is engaged in efforts to protect the rights of our HD families, in addition to
bringing into focus the difficult situations these families encounter to the attention of our federal, state and local elected
officials through advocacy. Educating elected officials and community leaders about the needs of all of us facing
this devastating degenerative disease is one of the best tools we have at this time in the fight against HD. Learn how YOU
can help!
For starters, become an HDSA Advocate. Then use the tools below to help you find your local, state and federal represen-tatives.
Next, follow how they are voting on issues effecting Huntington's Disease families and be sure to let them know
how you feel when they vote against that issue. If necessary, locate your local Media [television stations, newspapers,
etc.] and advocate HD!
Tips on Telephoning
& Writing & Emailing Your Respresentative including how to contact them.
Department
of Health and Human Services - Including all names and contact info as well as agencies within this department such as: Centers
for Medicare & Medicaid Services (formerly HCFA) and the ability to compose aletter to them on that site!
click on above then on the map of US
to locate your state representatives
Track your senators' and representative's votes by e-mail!
Get contacts for President
& VP, US Congress, State and Local Officials
Under this section,
if you see something you want to write your congress representiatve on, you can put in your zip code to get information on
them.
Begin
by clicking the state in which you live, or use the menu below. You can then enter the information required by your state
to register to vote. Once you have entered the required information, you will be able to print and mail your voter registration
application (requires Adobe Acrobat:download). Note: Residents of New Hampshire, North Dakota, Wisconsin, and Wyoming
are not permitted to use this form. (Secure site) |
Media Locator
Media Guide (National & Local)
Find and contact national
and local media search by Local/Zip, Individual, Organization/Network Affiliate or by clicking on your state in the map. |
To find your state
& federal
representatives use links below 
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