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HDSA

Compassion Use/Right to Try

The nonprofit, Huntington’s Disease Society of America (HDSA) continues to regularly update information on research and advocacy. Consider signing up for the HDSA newsletter. It contains a wealth of information.  http://hdsa.org.

Perhaps you are wondering about Right-to-Try legislation for Huntington’s disease patients who are end stage. HDSA provides a summary of the topic.

On its face, the idea behind Right-to-Try legislation is to allow families access to medications and treatments still in the clinical trial phase when an individual has no other treatment options left and is facing a terminal illness. Right-to-Try legislation focuses on cutting red tape in the Food and Drug Administration (FDA) to allow easier access to these experimental treatments. But, in reality, the FDA isn’t the issue.  Access to investigational therapies is already permitted through the Food and Drug Administration’s expanded access program. FDA currently approves 99.7% of all expanded access requests submitted by physicians and companies for patients with immediately life-threatening illnesses who cannot participate in clinical trials. Removing FDA from the process of obtaining investigational drugs, as Right-to-Try proposes, increases the risk of patient harm and creates confusion. When access to an experimental drug or treatment is denied, it’s almost always because the request has been denied by the pharmaceutical company, not the FDA.”

At this time all Expanded Access and Right-To-Try requests to Roche will be denied.  This was discussed in the recent HD Community-wide letter that was released by Roche in June.  Specifically, they said “We understand that families may wish to seek access to investigational medicines as soon as possible.  However, access to RG6042 can only be through clinical trial participation at this time. Because the benefits and risks of RG6042 are not fully understood, we are not able to grant pre-approval, compassionate use or “right-to-try” requests.  The company Roche/Genentech

https://www.bna.com/righttotry-doesnt-help-n57982092983/

We Can Never Lose HOPE…..

100% of the proceeds from the nonfiction book, Watching Their Dance, is being donated to the nonprofit, HDSA. https://theresecrutchermarin.com/purchase-book/

HDSA

National Youth Alliance-Helping Young People Deal with Huntington’s Disease


HDSA’s National Youth Alliance (NYA) motivates youth to get involved in their local Huntington’s Disease Society of America Chapter. Every child of a parent with HD has a 50/50 chance of inheriting the expanded gene that causes the disease. If the child has not inherited this expanded gene, he or she will never develop the disease and cannot pass it on to their children.

The Miller Family whose 3 children are involved in the NYA.

The NYA is made up of young women and men ages 9-29 from across the U.S. that are impacted by Huntington’s.

The NYA mission to not only support young people within the HD community, but also inspire the youth of HDSA to get involved in the battle against HD and be proactive in this fight.   http://nya.hdsa.org/ 

Talking to Kids about HD: http://hdsa.org/wp-content/uploads/2015/05/TWKBrochure-FINAL-WEB.pdf 

We Can Never Lose HOPE………

 

Therese is the author of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. 100% of the proceeds are being donated to HDSA.   https://www.amazon.com/-/e/B06ZY85776

Family, HDSA

The Faces of Huntington’s Disease

In the following video are the faces of Huntington’s disease (HD); a devil of a disease that attacks adults and children.  Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It’s like having ALS, Parkinson’s and Alzheimers at the same time.  HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.  http://hdsa.org/what-is-hd/ 

My three sisters-in-law, Lora, Marcia and Cindy had HD and are now gone from our sight.  http://www.theresecrutchermarin.com 

There is no cure or therapy at this time.  

Video taken at the Huntington’s Disease Society of America (HDSA) Annual Convention, June 7-9-18, in Los Angeles, CA and I was there!

We can Never Lose HOPE….  

HDSA

HDSA Convention-June 9, 2018-HOPE

Huntington’s Disease Society of America Annual Convention Continues: 

Today, Saturday, June 9th, has many workshops to offer to attendees again. Here is the link to today’s schedule.    https://guidebook.com/guide/119978/schedule/#date/06-07-2018

The morning will be spent listening to the experts at the HDSA Research Forum.

Please REMEMBER, some of the workshops will be LIVE STREAMED. Go to:  https://guidebook.com/guide/119978/list/586374/

In the afternoon,many Workshops are available to select from.  Here are a few: 

  1. Benefits of Staying Connected with Your Center of Excellence
  2. HD Activity Center for Persons with HD
  3. HDSA Special Events and Fundraising to Catapult our Mission Work
  4. How to Effectively Manage the Motor Symptoms of HD
  5. Diagnosing and Managing JHD

From 6- 7  p.m., is the Gala Reception and dinner and dancing goes on until 1 p.m. The Gala brings the 33rd HDSA Annual Convention to a Close.

       

We Can Never Lose HOPE…….

John, Dr. Vicki Wheelock, and myself at the 2017 HDSA National Convention in Schaumburg IL.

HDSA

HDSA Convention-Kickoff-June 8, 2018

Huntington’s Disease Society of America Annual Convention Continues: 

Today, Friday, is the day we begin to explore Huntington’s Disease topics  presented by experts/researchers/doctors in the HD world.  The presenters travel from around the world to speak at this convention, so I feel very lucky to be attending.

At 9 a.m., the day will begin with the Opening Keynote Speaker.

By early morning, the attendees will select the Educational Workshops they wish to attend

Please REMEMBER:  Some of the workshops will be LIVE STREAMED.  Go to:   https://guidebook.com/guide/119978/list/586374/

At noon, there will be a Community Awards Luncheon.  

The HDSA National Youth Alliance (NYA) will perform a Talent Show at 7 p.m.

 

We Can Never Lose HOPE….

 

 

HDSA

HDSA Convention-Leadership Day-June 7, 2018

Huntington’s Disease Society of America Annual Convention Continues: 

Day 1.  Leadership Day, for those in HDSA Chapters with Leadership roles, is today, June 7th.  It will start off at 8 a.m. with a Continental Breakfast and at 9 a.m., Nancy Rhodes, Director of Field Development & Operations, and Bill Kline will be our first speakers.   http://hdsa.org/about-hdsa/annual-convention/

After the meeting, at 6 p.m., there will be a Team Hope Walk for all to participate in.  (You will receive a Team Hope Walk t-shirt.)

Then, the Convention Welcome Reception will begin at 7 p.m. and the Exhibit Hall will be open.  (HDSA is graciously allowing me to sell my book again this year).

 

We Can Never Lose HOPE…………

HDSA Northern California Chapter Convention/Education Day

 

 

 

HDSA

HDSA Annual Convention-June 6, 2018-Here We Come

Today, is a very exciting day as hundreds of folks flying, driving to Los Angeles to attend the 33rd Huntington’s Disease Society of America (HDSA) Annual Convention.   http://hdsa.org/about-hdsa/annual-convention/  

John and I are also on our way, in our RV; it’s about an eight hour drive from Northern California.  We’ll be staying a Dockweiler State Beach; it has 3.7 miles of ocean frontage and 288 acres of beach and only four miles from the Marriott Convention Center where the Convention is being held.

This is my second Convention, and I was so impressed with HDSA staff, the support and hope that resonated throughout the three days last year.  I truly believe this is my second family who understand the Huntington’s Disease journey because they are living it just as I did for 25 years with my three sisters-in-law, Lora, Marcia and Cindy Marin.

We Can NeverLose HOPE…………………

John, Dr. Vicki Wheelock, and myself at the 2017 HDSA National Convention in Schaumburg IL.

HOPE Walk held outside convention center at the 2017 HDSA National Convention in Schaumburg IL.

James and Mel Miller at the 2017 HDSA National Convention in Schaumburg IL.

 

 

HDSA

Scholarships to Attend HDSA National Convention June 2018

James and Mel Miller at the 2017 HDSA National Convention in Schaumburg IL.

National Convention Scholarship– This scholarship is open only to first time Convention attendees who are not California residents. (California residents please see separate scholarship application.) Applicants must be 18 years or older as of January 1, 2018. Open to residents of the United States only.
Click here to Download Printable Application 
Click here to fill and submit the application online

California Resident Convention Scholarship- The intent of this scholarship is to help families and individuals who live in the state of California to attend the 33rd Annual HDSA Convention. The scholarship is open to any family member or caregiver who is affected by Huntington’s disease.

Click here to Download Printable Application 
Click here to fill and submit the application online

Deadline to apply for scholarships is April 4th, 2018.

Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

100% of the proceeds from Therese’s book sold in the U.S. will be donated to HDSA.  http://www.hdsa.org     Last December, Therese and John donated $9,015.00 to HDSA that was the profit from book sales since Therese published in April 2017.

Family, HDSA

2018 HDSA National Convention

I received this brochure in the mail from Huntington’s Disease Society of America (HDSA) the other day to register for this years National Convention in Los Angeles and I thought I’d share it.  (See below to print a copy)  I will be attending as a Board Member of the Northern California Chapter and I will also be selling my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.   http://hdsa.org/about-hdsa/annual-convention/ 

Highlights from 2017 Convention:  http://hdsa.org/about-hdsa/annual-convention/2017-2/

To print a copy of the brochure, click on these 2 links:

  http://theresecrutchermarin.com/wp-content/uploads/2018/02/Scan-2-1-e1518459511757.jpeg  

  http://theresecrutchermarin.com/wp-content/uploads/2018/02/Scan-3-1.jpeg  

Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

100% of the proceeds from books sold in the U.S. will be donated to HDSA.  John and Therese donated $9,015.00 in December which was the profit from books sold since Therese published April 2017.

 Subscribe to Therese’s Blog via Email

 Enter your email address to subscribe to Therese’s blog and receive notifications of new posts by email and receive the first chapter of her book, Watching Their Dance, via email.

 

 

 

 

 

HDSA

Marjorie Guthrie’s Crusade Against Huntington’s Disease

Marjorie Guthrie’s Philosophy-Wife of Woody Guthrie who suffered from Huntington’s disease

“There must be a strong, well supported National organization to assure the widest possible distribution of all our educational materials to the HD families, doctors, neurologists…to the whole scientific community and health professionals everywhere.  http://hdsa.org/about-hdsa/hdsa-history/ 

We must continue our search for HD families everywhere.

We must give active support to conferences dealing specifically with HD as well as related disciplines and disorders.

We must support and develop chapters in their local efforts and TOGETHER with National CCHD create the necessary financial resources to do the work that must be done.

We must begin a program, albeit limited at this time…to serve affected families wherever they may be….sometimes within the area of a chapter and when necessary beyond the capability of a chapter.

We must do everything possible to improve and expand our communications with our chapters…the public at large…..affected and non-affected families.

We must cooperate with existing health agencies and the federal, state and city government to improve the status of HEALTH and HEALTH PROGRAMS as a national priority.

All of these efforts must be done within the financial capability and responsibility of our membership.

Finally we must recognize that RESEARCH means many things. Any research in the areas of genetics and brain and central nervous system…however identified…may contribute ultimately towards a cure, control and early detection of HD.

To assist and help the implementation of this “philosophy”, we must secure and ensure the services of a professional executive who shall be responsible to our Executive Committee and/or Board of Trustees and to the “philosophy” expressed.”      https://bluerailroad.wordpress.com/marjorie-guthrie-on-life-with-woody-guthrie/ 

LOVE & PEACE,

 

Therese’s first book is a memoir/nonfiction, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks file.

We can never lose HOPE…….Therese  

100% of the profits from Therese’s book is being donated to HDSA.