Browsing Category

HDSA Northern California Chapter

HDSA Northern California Chapter

Kaiser Permanente HD/Genetic Movement Disorder Clinic

HDSA Center of Excellence Partner Kaiser Permanente, Northern California 

Kaiser Permanente in Northern California has a team of people dedicated to providing excellent care for patients and their families who are dealing with genetic movement disorders. They strive to help people who are affected, as well as their family members, live as well as they can, with courage, dignity, and grace.   https://mydoctor.kaiserpermanente.org/ncal/specialty/genetics/specialty_clinics/huntington_disease.jsp 

Department of Genetics
1650 Response Road
Sacramento, CA 95815

Director: Suketu Khandhar, MD

Phone for appts: 916-614-4075

Clinic coordinator: Mara Sifry-Platt, MS, CGC
Phone: 916-474-2512
Email: mara.sifry-platt@kp.org

Social worker: Eleanor Tadina- Siau
Phone: 916-614-4869
Email: eleanor.x.tadina-siau@kp.org

Kaiser Permanente Genetic Movement Disorder Clinic flyer:

https://mydoctor.kaiserpermanente.org/ncal/Images/GEN_GMDclinic_tcm63-1192495.pdf

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 publishing in April 2017.

 

 

HDSA Northern California Chapter

Help for Today…..Hope for Tomorrow

The Huntington’s Disease Society of America (HDSA) slogan resonates in my soul and I feel privileged to be associated and work with the awesome people on HDSA Northern California Chapter Board of Directors.  They share the same passion as mine; we are dedicated to improving (help) the lives of everyone affected by Huntington’s disease (HD).

There are many other wonderful Huntington’s disease organizations helping families around the world.  Here are a few:

http://www.hdsa.org  

Help4HDInternational

http://www.huntingtonsdiseasefoundation.org/

https://www.wehaveaface.org/

https://www.hda.org.uk/  

HOPE was so important to John and my survival as we watched his three sisters struggle with HD.  I always felt Hope was more than optimism; more than positivity.  I love this definition of HOPE by Dr. Andrew uses from the book The Anatomy of Hope:

Hope is one of our central emotions, but we are often at a loss when asked to define it. Many of us confuse hope with optimism, a prevailing attitude that things will turn out for the best. But hope differs from optimism. Hope does not arise from being told to think positively, or from hearing an overly rosy forecast. Hope, unlike optimism, is rooted in unalloyed reality. Although there is no uniform definition of hope, I found one that seemed to capture what my patients had taught me. Hope is the elevating feeling we experience when we see—in the mind’s eye—a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion.

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.

John and I donated $9,015.00 to HDSA in December which was the profit from books sold in the U.S. since I published in 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 Northern California Chapter

Martha Lehman-2018 HDSA Northern California Chapter President

On January 13, 2018, the HDSA Northern California Chapter Board of Directors kicked off their first 2018 planning meeting with a new president and several new board members.  Martha Lehman, retired social worker supervisor II CPS at Yolo County, who has been involved in the board for over 20 years, is the new president.

The board also welcomed four new members; Heidi Ramos, Amy Fedele-Lucchese, Ron Davis and Cole Holderman. Each individual brings an expertise that will assist the board in reaching their goals.  

               

Northern California Chapter (NorCal) is planning many events for the local Huntington’s disease community that will full fill HDSA’s mission statement: Improving the Lives of Everyone Affected by Huntington’s Disease and vision statement: A World Free of Huntington’s Disease.

Please visit Huntington’s Disease Society of America  Northern California Facebook page and web page on HDSA website to see dates of upcoming events.    https://www.facebook.com/hdsanocal/     http://northernca.hdsa.org/    and sign up to receive email notices.    http://northernca.hdsa.org/about/join-our-email-list   

Some of the Chapters upcoming events are: local convention, San Francisco & Sacramento Team HOPE Walks, Kaiser/UC Davis Education Days, Conquering HD One Sip at a Time, and HOPE dinner fundraisers.

I have been on the HDSA NorCal Board for one year and is slated to be president in 2019. HDSA currently has 54 volunteer led Chapters and Affiliates across the United States with its headquarters in New York City. Watching the Dance Huntingtons Disease

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 is being donated to Huntington’s Disease Society of America. Proceeds from books sold in other countries, will be donated to a Huntington’s Disease organization in the country where to book was purchased.

 We Can Never Lose HOPE…………………Therese