UPCOMING EVENTS!


Support Group Meetings:==== ====

Saturday, April 12, 2014 @ 4pm @ EVMS

Saturday, May 31, 2014 @ 4pm @ EVMS

HD Support Group Meeting

Location: EVMS (which is near Norfolk General Hospital in Norfolk)

825 Fairfax Ave

Norfolk, VA 23507

(757) 446 5955

http://www.evms.edu/about_evms/maps

LOOK FOR THE HD SIGN.

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Lewis Hall

Hodgen room 1184

We can park in the visitor garage

The first hour is free and after that a small fee of approx. $2

If you are unable to attend, please send an email with your contact information to jmjmartin44@gmail.com.



Walk a Mile in Our Genes



Bhati's walk at First Colonial High School will be upon us before we know it! Remember to mark your calendars for March 29, 2014!


Local high school student, Bhakti Raval, is hosting a “Walk a Mile in Our Genes” event on Saturday, March 29th at 11:00 a.m. - 2 p.m. at First Colonial High School, 1272 Mill Dam Rd., Virginia Beach, VA. The goal of the event is to raise awareness and education about HD and enjoy some community connection too. Please plan to attend!

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Outstanding Advocacy Award 2013====
Southeast Virginia Affiliate
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Not only has this group attended congressional hearings and Advocacy events in Washington DC, they regularly stay in touch with their Congressman and met with Commissioner Astrue along with Jane Kogan. Equally impressive are their outreach efforts. They speak to public officers, e.g., police officers and ER workers and have spoken to Medical students. They also use Social Media to promote their causes. They have a good collaborative relationship with their COE and work closely with them ensuring that they have current literature to share with patients and families. This year’s Outstanding Advocacy Award goes to the Southeast Virginia Affiliate.



Huntington's Disease Support Group of Virginia Beach met with Jason Walsh from WCVE to share their stories and explain how to be involved with the Walk for Hope. Click here for the story and video.

Even MORE pictures from the interview on 9.6.12. Press the PLAY button, and you can even click on the full screen button on the far right hand side.








HDVB Partner's with EVMS
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Dr. Paul Aravich and Mary Jo N. Martin, MD have brought their students to the support group meetings to learn first hand what it truly means to have HD. What do the symptoms really look like, how does it effect the care givers, the family members, the children who have parents with this disease? The students are working on an educational video to share. We are so excited to be working with them.

Below is a video of Dr. Paul Aravich - The Universe Between Your Ears. This is a TEDxNASA, 11/20/09.




At Risk for Huntington's Disease
Scientists have made huge strides towards treating and perhaps even controlling HD, whose killer gene inhabits every cell of my body. It now seems to be a question of "when," and not "if," treatments will come. Click here to read more...

You can follow Gene Veritas' blogs here.
www.curehd.blogspot.com

www.hdsasandiego.org/blog



Va. Beach family struggles with fatal disease



Click below for the full story.
Click here to read the full story.



IN THE NEWS!

  • Va. Beach family struggles with fatal disease
Click here to read the full story.
  • GEICO Names Marie Clay of Virginia Beach as Community Volunteer of the Year
09.28.10, 02:00 PM EDT
Click here to read the full story.

Visit msnbc.com for breaking news, world news, and news about the economy


May 10: Unlocking the mystery of the genetic condition that took her mother's life has become Dr. Nancy Wexler's lifelong mission. Now, 40 years later, her research may be paying off. NBC Chief Science Correspondent Robert Bazell reports. http://www.hdsa.org/index/nbc-nightly-news.html

Continuous Chest Compression CPR—University of Arizona Sarver Heart Center
Be a lifesaver; not a bystander. Learn Continuous Chest Compression CPR from Gordon A. Ewy, MD, and Karl Kern, MD, the physician researchers who developed this new approach to CPR.

CHECK THIS OUT!


Trey Gray Brooks & Dunn Drummer Fights Huntington's
The drummer for Brooks & Dunn fights this horrible, fatal neurological disorder. As interviewed for Fox25 Oklahoma City's Fox 25 Morning News by Brent Weber.

DON'T MISS OUT!


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HDSA'sE-Newsletters!!
HDSA E-Newsletter

2010 HD Parity Petition

Nearly 30,000 Americans are affected by Huntington's Disease. People with HD are routinely denied Social Security disability benefits and those that qualify must wait two years before receiving Medicare. The compounding effects of these barriers continue to leave many people with HD without the care they desperately need. The HD Parity Act (HR 678), a bipartisan bill in Congress, would fix these problems. HDSA is working to educate our elected leaders in Congress about HD. So far, with your help, HDSA has persuaded 126 Representatives in Congress to cosponsor the HD Parity Act (HR 678). This bill would make it easier for people with HD to receive Medicare and Social Security Disability benefits.
[[@http://www.hdsa.org/living- with-huntingtons/advocacy/hd- petition.html]]


STAY CONNECTED WITH HDVB
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A site created for young people to learn about HD in an age-appropriate, friendly and factually correct manner.



hdyo.org



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ABC show is looking for a deserving local family. Take a moment to nominate the Clay's house to be madeover to accommodate Marie's daughter Laurie because she has Huntington's Disease.



Click here for more info on the Clay's Story.

Marie and Laurie did not get picked.




Huntington's Disease devastates familyProblems viewing video? Click here for the full story.



1227973961782836377Farmeral_audio-icon_svg_hi.pngMarie Clay's Radio Interview on Hampton Roads Topics with Jim Long.


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In 1998 a genetic test confirmed suspicions that Laurie Clay, center, had inherited the HD gene from her father Phillip, who died from the disease in 2006. Surrounding Clay are her son Michael, fiancee Michael Harris and mother Marie.



A Roll of the Genetic DiceClick here for the full story.






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A Roll of the Genetic Dice was featured in the Health Journal. Click on the graphic above, and check out page 20.