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#cure4hdandjhd

Resources

Huntington’s Disease Online Support Groups

In the past few years, Huntington’s Disease of Society of America (HDSA) has been offering online support groups for those struggling with Huntington’s disease (HD) or living at risk.  I think it’s a great service to offer because not everyone in the U.S. has access to a  support group close to their home.  HD is a rare, fatal, genetic brain disorder that is like having ALS, Parkinson’s and Alzheimers at the same time.  There is NO CURE. http://www.hdsa.org

To participate in the group, please sign up.  Here is the link to do so:  https://www.supportgroupscentral.com/groups_

Melissa Billardi, HD advocate, Founder, President, CEO of HD Support & Care Network, offers a weekly call in support type group.  It is on Thursdays on See Me HD Group Call at 1:00 pm PT/4:00 pm ET   Join from computer:  https://PMDAlliance.zoom.us/j/769346544  

Or Telephone: Dial: +1-408-638-0968 (US Toll)
Or +1-646-558-8656 (US Toll)
Meeting ID: 769 346 544

Melissa’s Facebook page and HD Support & Care Network website:

https://www.facebook.com/Mbiliardi           http://www.hdscn.org/

We Can Never Lose HOPE………….

100% of the profit from Watching Their Dance is being donated to Huntington’s Disease Society of America (HDSA).  In December, I donated $9,015.00 to HDSA which was the profit from 2017 book sales.

 

HDSA Fundraising events

San Francisco Team Hope Walk October 13

Amy Fedele is the Coordinator for the SF Team Hope Walk. (with husband, Matt)

The Team Hope Walk program is Huntington’s Disease Society of America’s (HDSA) signature grassroots fundraising campaign designed to provide hope and support for those touched by this devastating disease. All proceeds support HDSA’s mission to improve the lives of people affected by HD and their families.  In 2018, 94 Team Hope Walks will be held across the U.S.

Huntington’s disease (HD) is a rare, fatal, genetic brain disorder that is like having ALS, Parkinson’s and Alzheimer’s at the same time.  There is NO CURE.  It slowly deteriorates a person’s physical and mental abilities and usually strikes during prime working years. 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://www.hdsa.org

Please help in the fight against HD and Juvenile HD by supporting the Walk or becoming a Sponsor.  To register, http://www.hdsa.org/thwsanfrancisco or to be a Sponsor, please email Amy Fedele, Walk Coordinator at: hdsabayarea@gmail.com  Read Amy’s story:  Amy Fedele’s Story

 

We Can Never Lose HOPE………..

End-Of-Life Issues

Make Your Wishes Known

Author Therese Crutcher-Marin

Our society today doesn’t like to talk about end-of-life issues even though no one gets out of this life alive.  Since each one of us will the confronted with our own mortality, wouldn’t you want to control what happens to you at the end of your life?  You can document your wishes by filling out an Advance Health Care Directive or a Power of Attorney for Health Care.  John and I have a Power of Attorney for Healthcare in our Living Will that our attorney created for us.

One way to have your family/friend abide by your wishes, when the time comes, is to have an Advance Health Care Directive form completed.  It’s not just having it filled out, it needs to be distributed to your family/friend who will be your advocate and in your medical chart at your doctors office/hospital.

An Advance Health Care Directive is a gift to your family.  Making end-of-life decisions ahead of time will lower anxiety, and allow the doctor to design a plan of care based on the directive.

To read about directives go to:

Express your Healthcare Wishes with an Advance Directive  

and Advance Care Planning

A copy of an Advance Health Care Directive from the California Hospital Association can be downloaded here:

https://www.calhospital.org/sites/main/files/file-attachments/form_3-1_-_english.pdf

We Can Never Lose HOPE…..

 

HD Clinical Studies

Good News for the Huntington’s Disease Community

On September 16, the Huntington’s disease community received the news they have been waiting for.  Roche & Genentech: one company, two names, announces its plans to begin the clinical trial on the drug RG6042 (formerly known as IONIS_HTTRx).

The Ionis-HTTRx drug is an antisense therapy. It targets messenger RNA, a molecule that is an intermediary between DNA, the cell’s genetic material, and the huntingtin protein. Cells use the message as a template to produce the protein. It is designed to stick to a faulty HTT gene’s messenger RNA, reducing the amount of abnormal huntingtin protein the gene generates.

Huntington’s disease (HD) is like having Alzheimer’s, Parkinson’s and ALS at the same time.  There is NO CURE and it affects children and adults.

Update on RG6042 (formerly known as IONIS-HTTRx)

Huntington’s disease global development programme: Two clinical studies to begin by end of 2018

Dear Global Huntington’s Community,

Thank you for your ongoing support and interest in the investigational medicine RG6042 for Huntington’s disease (HD).

Over the past months we and our partner Ionis Pharmaceuticals have been heavily engaged with communities around the world (patient groups, medical professionals, Health Authorities and payers) to collaborate and build the RG6042 global development programme and upcoming studies. We are eager for RG6042 to advance into further clinical development. In addition, as announced last month, the European Medicines Agency granted RG6042 PRIME (“PRIority MEdicine”) designation, which provides promising medicines enhanced interactions with the agency and the potential for accelerated evaluation.       Read the full article here

Article from HDBuzz.net   Roche announces details of its ‘pivotal’ huntingtin lowering study 

Article from huntingtonsdiseasenews.com  https://huntingtonsdiseasenews.com/2018/09/24/roche-announces-2-clinical-studies-potential-huntingtons-therapy-rg6042/

 

Author Therese Crutcher-Marin

We Can Never Lose Hope……….

 

The Woody Guthrie Family

Anna Canoni-Marjorie Guthrie’s Granddaughter

Anna Canoni, granddaughter of Woody and Marjorie Guthrie, spoke at the 2018 HDSA Annual Convention in Los Angeles CA last June.  Woody had Huntington’s disease (HD). Anna’s a great speaker and I was inspired by her talk about her grandmother, Marjorie Guthrie who is on my hero list. HD is a brain disease that is like having ALS, Parkinson’s and Alzheimers at the same time.  There is NO CURE.

History on Marjorie Guthrie:   http://hdsa.org/about-hdsa/hdsa-history/

Anna Canoni is 3rd from the left & Dr. Nancy Wexler is on the far left

Amy Fedele, NorCal Chapter Board member with Anna

I first met Anna last summer when John and I were on a Midwest book tour promoting my nonfiction book Watching Their Dance. We attended the Woody Guthrie Folk Festival in Okemah Oklahoma and some of the Guthrie family were there.  I spoke with Anna and she purchased a copy of my book.

Left to right: Anna, her mother Nora Guthrie, Louise Vetter and Dr. Nancy Wexler

We Can Never Lose HOPE……………..

Therese is donating 100% of the proceeds from her book to Huntington’s Disease Society of America (HDSA). In December, John and Therese gifted $9,015.00 to HDSA which was the profit from 2017 book sales.  Please support this cause by purchasing a copy.

Amazon: Amazon

Kindle: Kindle

B & N: barnesandnoble.com

Nook:  barnesandnoble.com

 

 

 

HDSA Northern California Chapter

The Sacramento Team HOPE Walk

 

The HDSA Northern California Chapter is holding its         10th Annual Sacramento Team HOPE Walk. 

Please come out and help in the fight against the cruelest disease on the planet; Huntington’s disease. (HD is a fatal, genetic brain disorder with no cure. It affects children and adults.  It’s like having ALS, Alzheimer’s and Parkinson’s at the same time).  http://www.hdsa.org

To register go to:  http://www.hdsa.org/thwsacramento

You’ll receive a T-shirt and breakfast will be provided. Coffee, bagels, fruit, yogurt, pastries. 

 

2 great RAFFLE prizes for the kids! GolfLand/SunSplash in Roseville! 

 

HDSA Fundraising events

A Rare Disease That Needs a Cure

 

Phyllis Marin

Lora, Cindy, Marcia Marin

Huntington’s disease (HD) is considered a rare disease because it affects 1 in 10,000 people in the U.S.

Definition:  Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. 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.

The gal in the top left hand corner is John’s mother and the three lovely ladies in the other picture are my sisters-in-law.  They all died of complications from Huntington’s disease at young ages.

The disease affects children and adults and there is NO CURE.  Juvenile Huntington’s disease, JHD, is approximately 10% of all cases.

Information on HD from Stanford University 

HDSA Northern California Chapter is hosting the 10th Annual SACRAMENTO TEAM HOPE WALK on September 8th.  http://northernca.hdsa.org/ 

Northern California Chapter FB page:  https://www.facebook.com/hdsanocal/

Please support this 5K Walk along the Sacramento at the River Walk Park in West Sacramento; 651 2nd Street.

Adults-$25.00 Children-$10.00.  When registering prior to the Walk, you will receive a HOPE Walk T-shirt and a free breakfast.

To register, click here:   http://www.hdsa.org/thwsacramento 

 

We Can Never Lose HOPE……

HDSA Fundraising events, The Marin Siblings

John & Therese Marin Team Hope Walk

John and I are participating in the HDSA Sacramento Team Hope Walk on Sept. 8th, 2018 to help in the fight against Huntington’s disease that killed my 3 sisters-in-law, Lora, Marcia and Cindy. Click here to register or to make a

Lora, Cindy and Marcia Marin

donation:  https://hdsa.donordrive.com 

We are so grateful John tested negative for the mutated Huntingtin gene in 2016.  I’m on the Huntington’s Disease Society of America (HDSA) Northern California Chapter Board of Directors organizing fundraisers and heightening awareness. http://www.hdsa.org

LUNCH IS PROVIDED WHEN YOU REGISTER 

 

We Can Never Lose HOPE……

 

Family, Fundraising

HDSA Sacramento Team HOPE Walk

A heartwarming story about Natalya Gonzalez, whose family struggles with Huntington’s disease. The family lives in the County of Yolo, a county located in the northern portion of the U.S. state of California.  http://hdsa.org/living-with-hd/juvenile-onset-hd/   http://hdsa.org/what-is-hd/

“A typical day for Natalya Gonzalez involves far more responsibilities and challenges than those of an average sixth-grader. The Yolo Middle School student balances schoolwork with family responsibilities as she pitches in at home to help her mother care for her father and an older sister, who both suffer from Huntington’s Disease, a debilitating genetic disorder.” Full article:  Yolo Student Thrives Despite Challenges

The Huntington’s Disease Society of America Northern California Chapter is organizing a Sacramento Team HOPE Walk to help families, like the Gonzalez’s.  Come out and walk on Saturday, Sept. 8th, at the River Walk Park in West Sacramento.  To sign up or donate to the event, go to http://www.hdsa.org/THWSacramento 

FB page https://www.facebook.com/hdsanocal/

 

We Can Never Lose HOPE….

Fundraising

Sacramento Team HOPE Walk-Sept. 8

We are getting close to the Sacramento Team Hope Walk.  Create your own Team and help the Northern California Chapter fundraise to continue supporting the four (4) Center of Excellences in Northern California, and the seven (7) Huntington’s Disease Support Group Facilitators.

Sign up here to participate:  http://www.hdsa.org/thwsacramento

CENTERS OF EXCELLENCE:

UC Davis Medical Center-Sacramento https://www.ucdmc.ucdavis.edu/huntingtons/team.html,

Kaiser-Sacramento/Bay
Area  https://mydoctor.kaiserpermanente.org/ncal/specialty/genetics/specialty_clinics/huntington_disease.jsp

UCSF Medical Center https://www.ucsfhealth.org/clinics/huntingtons_disease/

Stanford  Health Care-Bay Area https://stanfordhealthcare.org/medical-conditions/brain-and-nerves/huntingtons-disease.html

We Can Never Lose HOPE……………

Sponsor of Hope Walk