HDSA Living with HD

HDSA is pleased to announce an addition to the Living with HD section of the national website. The new online Equipment Exchange Board is designed to facilitate the sharing of durable medical equipment such as Broda chairs and beds, wheelchairs, walkers, hospital bed accessories, and assistive mobility devices. The Equipment Board offers a forum for families to support one another by posting information about durable medical equipment they no longer need.

The Equipment Board is simple to use, and designed to promote direct collaboration between individuals seeking medical equipment, and those who no longer need it. To post your used equipment, or to see what is available, just go to the Living with HD section of the HDSA website, www.hdsa.org. You can also click here to post medical equipment, or click here to find equipment. Please note that Donation receipts cannot be issued for posted equipment. HDSA does not participate in any equipment transaction, nor can it take possession of posted equipment or offer advice about the suitability of equipment for your loved one. Please contact Jane Kogan if you have any questions at Jkogan@hdsa.org.

HDSA ADVOCACY: Help Make HD a National Priority!

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 jkogan@hdsa.org at the HDSA national office at jkogan@hdsa.org or visit the HDSA Advocacy Page

DC Metro Chapter Announces an EASY way to Contribute

You can help raise money for the DC Metro HDSA Chapter just by searching the web! Amazing but true....The Chapter has partnered with "Good Search", a Yahoo based web search tool that donates money to our Chapter every time you search the internet using the Good Search Search Engine. The more people use GoodSearch on behalf of your cause, the more money it will raise! Just follow the follow the link to the left side of this webpage which will take you to the Good Search webpage. Now type in Huntington's Disease Society of America - DC Metro Chapter. Once the Chapter name is in the selected box you can then "download the toolbar" and your computer will show the "Good Search option" as a web browser when you log on to the internet. Everytime that you choose Good Search as your search tool from your desktop, you will raise money for the DC Metro Chapter.

As an extra bonus, the DC Metro Chapter has also partnered with Good Shop, an affiliate of Good Search. You can use the Good Shop link at the left of this page and you will have access to more than 900 of the top Internet retailers and travel sites including Amazon, eBay, Target, Apple, Expedia. By using the entry way into any Good Shop Vendor, every purchase that you make will result in a donation to the DC Metro Chapter. This is at NO additional cost to you. This too takes just a few seconds to go to www.goodshop.com, select your charity, and then click through to your favorite store and shop as usual. To give you a sense of how the money can add up, the ASPCA has already earned more than $23,000!

Huntington's Disease Society of America (HDSA)Washington Metro Area Chapter is now on Facebook!