Hello everyone and Happy Holidays to all. Tonight we are re-running Celebrating The Advocates.These four amazine women who are JHD/HD advocates and caregivers deserve gold medals in my book. We wish to honor them and encourage them in this lifes journey. We all need to help and support eachother, especially at this time of year. Enjoy the show!

Super incredible JHD/HD advocates tonigh:

Roberta Brink

Sharon Thomason

Stacey Sargent

Vicki Owen

Tuesday, December 16, we are celebrating all of our amazing JHD/HD advocates who give of their time and energy so willingly and freely to make a difference for their loved ones and for our community members who are suffering from Juvenile Huntington's disease and Huntington's disease. Tonight we will be speaking with four incredible special guests: Stacey Sargent, Roberta Brink, Sharon Thomason, and Vicki Owen. We are so excited to be able to show our appreciation for all that they do AND for all that you all do for bringing awareness and advocacy to JHD and HD. Tune in for an incrediblly special program.

Tuesday, December 9, 2014 3:30 pm PST/6:30 pm EST

With suprise guest HD researcher Dr. Leslie Thompson from the University of California at Irvine and Super HD Advocate Warrior, Frances Saldana, will be here to give us an update on HD research at UCI and the 10th annual WSCS (World Stem Cell Summit) that just happened in San Antonio, TX, December 3-5, 2014. Every year GPI (Genetics Policy Institute) has their summit which brings the best of the best of regenerative medicine, science and research from around the world together to meet and exchange information. 

This year, the HD Advocate organizations: Help 4 HD International, Joseph P. Roberson Foundation and UCI HD Care were honored with the Inspiration Award: HD Advocacy Community. Help 4 HD VP, Katie Jackson, UCI HD Care President, Frances Saldana and Joseph P Roberson Foundation President, Judy Roberson accepted the awards.

Tune in for some amazing information.

Tuesday, December 2, 2014 - 3:30 pm PST/6:30 pm EST

Tonight we will be discussing Dr. Goodman's latest article "2014: A Yin-Yang year for HD".

She writes: "Particularly during this past year, living with Huntington's disease (HD) has been full of its ups and downs. First there was the hope in ongoing clinical trials of both coenzyme-Q-10 and creatine. Then there was sadness and fear that came with their failures.  And now hope is springing again for new drugs coming to clinical trials now that will take a few years to complete.  No doubt this Yin-Yang cycle will continue for HD, just as it does for other diseases."

"However, there may be reason to believe in the chance of greater success this next time around."

Read her article: www.HDDrugworks.org

Tune in at 3:30 pm PST/6:30 pm EST

This show was pre-recorded. We wish to play this show today as Help 4 HD Director of International Affairs, Daniel Medina is in Mexico City right now visiting Margaret and her center.  Margaret D’Aiuto Martarano de Gallardo was born in California she become a nurse, meet and married her husband Dr. Luis Gallardo Ayala, and moved to Mexico. She has seven children and at the age of 61, her husband is given the news that he might have HD and he passed away in 1992. We are priviledged to interview this amazing woman of 90 years young about her trials and triumps over Huntington's disease and her life of love and commitment to help those who are suffering from Huntington's Diease.

She is the Director of Asociación Mexicana de la Enfermedad de Huntington IAP in Mexico

http://www.huntingtonmexico.org

Hear her story on Help 4 HD Radio!

Tuesday, November 18, 2014 – 3:30 pm PST/6:30 pm EST

Our incredible special guest is Dr. Andrew McGarry from Cooper University NJ, who is Co-PI for the PRIDE-HD study in the USA, which is sponsored by Teva Branded Pharmaceutical Products R&D and coordinated by HSG (Huntington Study Group). We will be talking about the ongoing global research study, which is a Phase II clinical research study of an investigational drug called pridopidine in individuals who have a diagnosis of Huntington disease (HD); and how the results of this trial may help to guide the future treatment of Huntington disease.

The purpose of this randomized double blind study is to see what effect the investigational drug, pridopidine, has on movement, thinking, and behavior, compared to placebo, in people with Huntington disease after 26 weeks of receiving either pridopidine or placebo. In addition, information will be collected about safety and tolerability of pridopidine in people with HD.

Dr. McGarry works in the development and implementation of clinical trials in movement disorders and belongs to the American Academy of Neurology, Alpha Omega Alpha Medical Society, and the Movement Disorder Society.

Tune in for an amazing and informative show!

Help 4 HD News Channel has been in contact with Louise Vetter CEO and has offered HDSA a forum to give our community an update on its progress on programs, research initiatives, Centers of Excellence, Diplomat Program and more.  

We will be discussing the following information:

I.             HDSA Overall

Implementation of Strategic Plan

guides everything we do with clear goals and practices to support our missionThe result: new advocacy, education and research programs to support HD families

II.           Research

HD Human Biology ProjectHDSA Research WebinarsDon King Fellowships

III.          Education & Community Support

National Social Worker to staff HelplinePartnership with HDYOResources regarding Caregiving, Longterm Care and Genetic testingNew HDSA Center of Excellence grant program

IV.          Advocacy

HD Parity ActSocial Security AdministrationUS Food & Drug Administration

V.           Importance of Community Engagement

More HDSA Chapters & AffiliatesMore Team Hope WalksMore visibility: Family is Everything as a new way of building awareness of HD to new audiencesMore participation in science:  Endorsement of Enroll-HD

VI.          Closing thoughts

The entire HD community shares a common goal – to end HD.  Together we are stronger!

TUESDAY, NOVEMBER 4, 2014

Dr. Goodman writes, “Bummed" was what this author felt after the recent announcement of (HD).  We can put some positive spins on recent trial failures; we have learned how to run large clinical trials, we can learn from negative outcomes, and best of all hundreds of HD individuals are freed up to participate in other (potentially better) trials.  But the reality is that this is one more disappointing failure in an increasingly long string of negative trials. The community is bummed.  Saying it straight is better, helps us to get over it, get up and go on to what comes next.…

We will be talking about the recent closure of the HSG clinical trial CREST-E. Send your questions and comments to [email protected]

PRE-RECORDED - TUESDAY, JUNE 17, 2014 Our incredible special guest is Claudia Testa, MD, PhD, Associate Professor of Neurology, and Associate Director of Clinical Research and medical director of the new VCU Parkinson's and Movement Disorders Center. The Center aims to integrate research, clinical care, and education and outreach missions in an interdisciplinary collaborative approach to making a difference in movement disorders. Dr. Testa moved to VCU in 2011, where she is excited to lead a new Huntington disease program.

We will be discuss her career of care and research. Read more...

After completing her MD and PhD degrees, Dr. Testa returned to Boston for internship at Beth Israel Hospital, then neurology residency in the Partners program at Massachusetts General Hospital and Brigham and Women's Hospital, where she was a chief resident her final year. She moved to Emory University for a movement disorders fellowship and basic research with Dr. Timothy Greenamyre.

The HDSA Center of Excellence for Huntington Disease at Emory University was an important part of her growth as a clinician and scientist. Over eleven years at Emory she transitioned from fellow to faculty to medical director of the HDSA Center of Excellence, with involvement in several HSG studies. More recently, to enhance her skills in human disease based research she completed a Masters in Clinical and Translational Research (2012) while a faculty member at Emory University. Between Emory and VCU, she has over 13 years’ experience as an HD clinical study investigator, working with symptomatic, pre symptomatic, and HD at risk research participants. Her current research interests are in genetic causes and risks for essential tremor, Huntington disease pre-motor physiology changes, and Huntington disease observational and treatment trials.

PRE-RECORDED TUESDAY, MARCH 29, 2014 3:30 PM PST

Our incredible special guests today are:

Joan F. Schanck, MPA

William Hinman, CFRE, MBA

Kelly Milukas, RMF Commissioned Artist 

Katie Jackson, VP, Help 4 HD International

SUBJECT

Tonight we have four amazing and incredible guests here to talk about Regenerative Medicine Foundations upcoming Conference and Gallery Opening event which will be held at the Claremont Hotel in Berkeley, CA (May 5-7). We have Joan Schank, MPA, Academic Research Program office at Wake Forest Institute for Regenerative Medicine and Director of Education for the Regenerative Medicine Foundation. We have Bill Hinman, CFRE, MBA and Executive Director of the National Regenerative Medicine Foundation. Its mission is to encourage and promote unbiased efforts which accelerate the discovery and development of new regenerative medicine therapies for patients. Then we have Kelly Milukas, from Tiverton, RI, an amazing and talented award winning, multimedia, modern fine artist. She has been commissioned by RMF since 2010 to present her art exhibit “Keys to the Cure”. Visit her beautiful textural and pastel works atwww.kellymilukas.com. Katie Jackson, VP H4HDI and patient advocate extraordinaire is also with us tonight. She will be one of several honored panel speakers at the Conference Gallery Opening Event on May 5th. It's going to be an awesome show today!