USHDA

More than "a cure"...an open door!

The American lay advocacy movement overlooks those suffering with HD today, effectively abandoning our wounded in the trenches. It vows to make this the last generation with HD.  "Everyone, rally 'round the flag, straight to the cure!" But the inference is clear: write off today's suffering with blind faith that a cure is just around the corner.

We pray it is.

Do hope. But do not step over the wounded among our families. These sufferers need help now, need closed doors opened, need a path to answers in place of a maze; need more tutoring and less testing.

The United States Huntington's Disease Alliance is an alliance of US citizens touched by or concerned with Huntington's Disease, an alliance of individuals bound by these ties:

• Achievements of scientists working on our behalf are to be recognized and celebrated!.
  

• Alleviating the suffering of those affected today is of equal value to shielding unborn generations from it.
  

• Huntington's Disease is an American public health problem requiring accommodation by our human service system.
  

• Care of the affected individual is an act of a healing or palliative nature not an incidental ancillary service driven by research.
  

• We are neither naive or cynical: families touched by HD need friendraisers more than fundraisers.
  

• Our aim and history is lay self-advocacy. May it be our legacy.
  

• Our American family touched by Huntington's Disease is part of the world family touched by HD.
  

• In our American tradition, we select November as Huntington's Disease Gratitude Month.
  

• We choose no legal standing, have no collective assets, employ no one, make no promises and will never ask you for money.
  

Jimmy Pollard

Lowell, MA

Welcome Allies

Next ally here!

Your hometown!

Read more...

• Should we recognize and celebrate the achievements of the scientists working on our behalf?
  

• Is alleviating the suffering of those with HD today equally important as shielding unborn generations from it?
  

• Do you see that Huntington's Disease is a public health problem requiring accommodation by our human service system?
  

• Do you believe that care of those with HD today is an act of healing and is not an ancillary service driven by research?
  

• Do you think families touched by HD need "friendraisers" more than "fundraisers?"
  

• Do you wish to ally yourself with fellow laymen and other advocates that share these beliefs?
  

• Are you aware that our American family touched by HD is part of the world family touched by HD?
  

• Will you join us in expressing thanks to all who contribute to care, research awareness and advocacy of families in the month of November?
  

• Do you understand that this alliance is not a legal entity, holds no collective assets, employs no one, makes no promises and will never ask you for money?
  

• Do you know, hope, wish and believe that, allied by these tenets, goodwill and spirit we can make things a little better?
  

• Are you an American citizen? [If you are not an American citizen, we invite to be an Global Associate Member of USHDA. There is more information in the box below.]
  

 

  You are an ally!

  Send me an e-mail that says, "Jimmy, I want to join the

  United States Huntington's Disease Alliance!" Then I'll           add you to this list.

  To send me an e-mail just click here!

How To Join The United States Huntington's Disease Alliance

Answer these questions:

Did you answer all the questions "Yes?"

Send an e-mail!!

USHDA welcomes our international allies!!!

We American allies are proud that Marjorie Guthrie launched the global HD self-advocacy and mutual support movement from her kitchen table here in the United States. We recognize that you too share a deep enduring gratitude to her.

In recognition of the spirit that allied Marjorie and so many of you in so many countries, we welcome you to join USHDA as a Global Associate Member. Please join us by sending Jimmy Pollard an e-mail with your name, country and a brief message. We'll add your name and country's flag to our list of Global Associates.

Global Associates

Patricia Candlish

Guelph,Ontario

Anne

Alberta

Barb Marshall

British Columbia

Dave & Donna Ulch

Chatham, Ontario

Drew Harris

British Columbia

Peter

Queensland

Pat

Queensland

Jimmy Pollard

Lowell

Charlotte Carlson

Brookline

Dr. Marsha Miller

Wilmington

Dianne Vrem

Steve Ireland

Georgetown

Rick Harden

Irving

Bunny

Stockdale

Susan Hayes Taylor

Mike Brown

Austin

Patty Penny

Gerleine Schoonover

"..you can put me on as the 'old HD Warrior..'".

San Antonio

Suzanne Kengla

Hudson

Mary & Al Coutts

Gabrielle Hamilton

Dr. Don Higgins

Albany

John & Marie Urrutia

Hicksville

Patricia Lambert

Smithtown

Debbie Scannell

Hamburg

Annette Williams

Gayle Kingsbury

Gerri Herbst

Marysville

LaVonne Veatch Goodman

Eric Waycott

Cloverdale

Tara Bintliff

Clearwater

Heidi Hornick

Pat & Phyllis Bain

Naples

Phyllis Daley

Fredericksburg

Bonnie Coats

Omro

Tom & Helen Lister

The Highlands

Gordon Robertson

Sharon

Ayr

Marie McGill

Edinburgh

Audrey Sperring

John Eden

Glasgow

Inge & Gerard Letteboer

David Bruce

Bristol

Sue Wright

London

Anne Stephenson

Hampshire

Steve Smith

Norwich

Dr. Willie Barker

Newcastle-on-Tyne

Asuncion Martinez

Madrid

Montse Torrecilla

Barcelona

Lucia Alworth

Dr. Wallace Deckel

Mary Dunleavy

Nanette Chambers

Apple Valley

Gayle Tinnerman

San Diego

Jan Jones

Los Angeles

Gloria

San Jose

Andrea Zanko

San Francisco

LeVone Howard

Topeka

Patricia Wolf

Steve Wolf

Sandy Gustkey

Dover

Ollivene Spurgeon

Raytown

John Yoder

Kansas City

Julie Prink

Ridgefield Park

Stacy Brendli

Lincoln Park

Dr. Paula Houck

Phil Hardt

Carmen Leal

Honolulu

Ruth Hargrave

Knotts Island

Will Brown

Raleigh

Bryan Smith

New Cumberland

Chris Jensen

Erie

We need a CURE but we need HOPE NOW

soft smile...  ...Anne                       Canada

How I long to see things made better and easier for our loved ones with HD.

Susan Hayes

Taylor, Texas

"...although a cure in 20 years would be fantastic, the people suffering today need help today."

John Yoder

KC, Missouri

Christiane Lohkamp

Stuttgart

We are one big Huntington Family spread over the globe. We have to stand together in understanding, love, care and  hope.          Christiane Lohkamp          Stuttgart, Germany

Maggie

Broken Arrow

Juanita Mizell

Cache

Beatrice De Schepper

Ursula Anna Kleibrink

Alvor

Maria de Conceicao

Lisbon

Paulo Mendes

Portimao

We're gathered from all the world over,

All cogs in a turning machine,

We stand on the shoulders of giants,

and we're beating this broken down gene.

Steve Smith

Norwich, England

Although a cure in 20 years would be fantastic, people suffering today need help today.

          John Yoder

          KC, Missouri

Gail Hradek

Glen Ellyn

The Alliance

57

Global Associates

29

Ron Cleveland

Salmon