Help for today. Hope for tomorrow.

The iowa connection

Chapter News

You can help by encouraging your friends, family members, coworkers and others to take action to families affected by HD.

This week we're asking you to Sign our new Parity Petition, and then send an email to your friends and family and ask them to do the same. By signing your friends and family can show they support the HDSA's efforts to improve access to Disability and Medicare Benefits.
We've made it as easy as possible to take action.  Simply click on the "Tell a Friend" link and plug in the email addresses of up to 6 friends.  Our state of the art computer system will then send them a message and encourage them to sign.  It's that easy.
Nearly everyone affected by HD has trouble obtaining disability benefits.  HDSA is leading a national campaign to address this problem, and we need your help!
A bill in Congress, HR 678, The Huntington’s Disease Parity Act of 2009 would revise the current Social Security Administration (SSA) guidelines for determining disability caused by HD.  It would also eliminate the two-year waiting period to receive Medicare benefits after a disability determination is made by SSA. If enacted into law, HR 678 would significantly improve the lives of everyone affected by HD.

Support our grassroots HD Movement! Take 2 minutes right now to contact your Representative about HR 678.

Does your Congressman support HR 678? (Click here to see if your Rep is on board).  So far, over 60 Representatives have agreed to cosponsor HR 678, largely because their constituents have asked them to support it.  By contacting your Representative, sharing your personal story, and asking him/her to cosponsor HR 678, you can join our cause! Click here for a sample letter to send to your Congressional representative.

If your Representative is already a co-sponsor, congratulations!  Now invite your family and friends to join our effort by forwarding this message to them.

Since we need support from both houses of Congress, you can also send an email asking your two Senators to introduce the Huntington’s Disease Parity Act in the Senate.  Click here for a sample letter to send to your U.S. Senators.

Change cannot occur without your help. Persistence is key if we want change. Please join the HDSA advocacy movement today.
If you would like more information about HDSA Advocacy, HR 678, or help in scheduling a home office visit with either your Rep or Senators, please contact Jane Kogan at the HDSA national office at jkogan@hdsa.org or visit the HDSA Advocacy Page

Hdsa advocacy: we are family...grow the hd movement

Pickle ball tournament at blair high school continues to be a success

The HDSA National Convention is just around the corner. The convention will be held at the Hilton North Raleigh in Raleigh, NC, from June 25 to June 27, 2010. Early Bird Registration, postmarked on or before June 1, is $155 per adults or $120 per person for a family registration (2 or more adults) and it is $85 for children 18 and younger. You must book your hotel separately by calling 919.872.2323. Mention you are attending the Huntington’s Disease Society of America’s Convention, the Convention dates and group code is HDS. The rate for a single, double, triple or quad room is $115 plus taxes and must be booked by May 30, 2010 for the discounted rate. For more information you can go to the HDSA hotel convention website www.hdsa.org/conventionhotel.

The HDSA National Convention is full of information and events geared specifically for HD patients, caregivers and professionals. Topics can range from research opportunities and breakthroughs, patient care, fundraising and even a meditation room.

You can register on-line at www.hdsa.org/convention or if you would like more information contact Robert Coffey by email at coffeyr@hdsa.org. 

We need your help! Will you let us share your story with the Senate and the Social Security Administration?
Almost every day, we hear from families about how difficult it is for their loved ones who are disabled by HD to navigate the Social Security system.  The guidelines for determining disability are several decades old, so people often wait years to receive the Disability benefits which they are rightfully due. 

The Huntington's Disease Parity Act will make it easier for people with HD to receive Social Security disability benefits.  We also want to end the two-year waiting period for Medicare benefits once disability is granted.

Here's how YOU can help!:

Did you or someone you care about have trouble applying for Disability?

Do you know someone who experienced delays in receiving Disability benefits?

Did the two year wait for Medicare benefits prevent you or a loved one from receiving care for HD?

 If you answered yes, then here is how YOU can help!  Speak up for HD families and make Washington and SSA aware of how the Social Security Administration continues to fail people with Huntington's Disease. 

Click here to send Jane Kogan, Manager HDSA Advocacy and Program Services, an email about how the Huntington's Disease  Parity Act would help you or someone you love. Please be sure to include how long it took to obtain a determination, whether you had to appeal, how many times you appealed, whether you had to hire an attorney, how much it cost, whether you had health insurance while waiting for a disability determination, if not then how did the lack of health insurance affect you or your loved one.

Then, tell Jane where you are from so that she can share your story with your U.S. Senators, and with the Social Security Administration.  

Shafted by SSA? Denied, Denied, Denied? Tell Your Story!

HDSA is organizing a "We Are Family" campaign designed to get more people talking about HD.