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HDSA Northern California Chapter

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 Northern California Chapter

The Nonprofit Dear to my Heart

John and I have been connected to the Huntington’s Disease Society of America (HDSA), a nonprofit dedicated to improving the lives of anyone affected by Huntington’s disease (HD) for many years. 

Shana Verstegen with her mother who had HD.

It began long ago, 1978, when John’s family secret was discovered; his mom had HD.  I’ve received newsletters and info from them for over 20 years and we have donated to the organization regularly as did John’s father.  http://www.hdsa.org

So, I’m shouting out about the HDSA Northern California Chapter’s fundraiser on Sept. 8th, the Sacramento Team HOPE Walk.  John and I have created “The Marin Team” and want to raise $1,000.00.   Here’s the link to register for the Walk or to make a donation to the event.  Any dollar amount is helpful in the fight against HD. (HD is a fatal, genetic brain disorder that affects children & adults & there is no cure. It’s like having ALS, Parkinson’s & Alzheimer’s at the same time.)   http://www.hdsa.org/THWSacramento

Another link directly to “The Marin Team” page: https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.participant&participantID=44954  

 We Can Never Lose Hope……

HDSA Northern California Chapter

Dr. Wheelock & Khandar are Honored at the HDSA Sacramento Team HOPE Walk

The HDSA Northern California Chapter will honor Dr. Vicki Wheelock, Clinical Professor Neurology UC Davis, and Dr. Suketu Khandhar, Kaiser, Movement Disorder Neurologist both practicing in Sacramento at the Team Hope Walk, September 8, at the River Walk Park, 651 Second Street in West Sacramento.

Register for the The Sacrament Team Hope WALK at:  http://www.hdsa.org/thwsacramento 

The Mission at the heart of the Northern California Chapter is dedicated to improving the lives of everyone affected by Huntington’s disease (HD).  Since there is no cure for this horrific disease that affects both children and adults, the 54 HDSA Chapters around the country are charged with fundraising and heighten awareness.  The dollars generated from local fundraising events help fund 43 Centers of Excellences around the county, fund HD support group facilitators, and fund an HDSA social worker to help HD families with resources.  Northern California Chapter website: http://northernca.hdsa.org/

Dr. Vicki Wheelock

Dr. Vicki Wheelock’s HD patients are seen at the UC Davis Huntington’s Disease Medical Clinic, 3160 Folsom Boulevard, Sacramento, CA. 916-734-3588.   https://www.ucdmc.ucdavis.edu/huntingtons

Dr. Suketu Khandhar with genetic counselor Mara Stirfry-Platt

Dr. Khandar’s HD patients are seen at Kaiser Permanente Huntington’s Disease/ Genetic Movement Disorder, 1650 Response Road, Sacramento, CA. 916 973-5000  https://mydoctor.kaiserpermanente.org/ncal/specialty/genetics/specialty_clinics/huntington_disease.jsp 

We Can Never Lose Hope……………………

HDSA Northern California Chapter

Family is Everything

Last week, the HDSA Northern California Chapter Board members met with Dr. Vicki Wheelock. Lisa Kjer, social worker, Kathryn, Huntington’s D Clinic RN at UC Davis Medical Center, HD Clinic, to brainstorm how to increase the Chapter’s community disease outreach and fundraising.   https://www.ucdmc.ucdavis.edu/huntingtons/ 

The Chapter is dedicated to improving the lives of everyone affected by Huntington’s disease and we do this by generating dollars to help in the fight against this horrific disease that has no cure.  Through our fundraising efforts the Chapter supports/funds the HD Clinic, seven support group facilitators and the HD social worker.  

Kaiser Permanente HD website:   https://mydoctor.kaiserpermanente.org/ncal/specialty/genetics/specialty_clinics/huntington_disease.jsp   

The Huntington’s Disease Society of America’s slogan is, “Family is Everything” & “No one fights alone” . The Huntington’s Disease community is truly one big family.      http://northernca.hdsa.org/     https://www.facebook.com/hdsanocal/  

We Can Never Lose Hope…………

 

HDSA Northern California Chapter

May is Huntington’s Disease Awareness Month

Yesterday, HDSA Northern California Chapter held its Annual Huntington’s Disease Education Convention supported by a grant from TEVA Pharmaceuticals.  The grant helps the Chapter to continue the HDSA Mission:  To improve the lives of everyone affected by Huntington’s disease.            http://www.tevapharm.com/ 

The Chapter loves to offer the Convention to the HD community in May because:

May is Huntington’s Disease Awareness Month!  

It was a fun, positive, informative day for the attendees and the Board of Directors are thrilled with the turnout.   http://northernca.hdsa.org/ 

Here’s some statistics on the day.

Registered online:  187+ 22 vendors/speakers
 
Workshops & number of attendees:
Managing behaviors:                60
Advocacy and Clinical Trials:    31
At-risk Discussion:                     6
HD and the family:                    12
Yoga:                                           5
(Total 114)
HD 101 (genetic testing):                              36
Gene Positive: now what?:                           30
Increasing your support system:                  40
Advanced directives and power of attorney:16
(Total 122)
      My table at the Convention                Heidi Ramos, Amy Fedele, Katie Jackson
                

Therese will be selling her memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, at the convention.  The book is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format. 100% of the profit from the book is donated to HDSA. 

Therese and John donated $9,015.00 to Huntington’s Disease Society of America (HDSA) which was the profit from her book since she published in April 2017.

HDSA Northern California Chapter

May is Huntington’s Disease Awareness Month

     The HDSA NorCal Chapter Convention is Tomorrow, May 5th.

For those who live in Northern California, and would like information on Huntington’s Disease, the NorCal Chapter will host it’s 2018 Annual Convention/Education Day.   What is HD?   It’s free & lunch is provided.  Please register at:

 http://northernca.hdsa.org/about/norcal-chapter-convention-2018

In the morning, the Convention offers nine (9) workshops to chose from.  10 a.m.-11 a.m. Session 1; 11:15 a.m.-12:15 p.m. Session 2:

  1.  Managing the Behavioral Aspects of HD
  2. Advocacy and Clinical Trials
  3. At Risk Discussion Group
  4. HD and the family: Relationship Changes and Talking to Children
  5. Yoga
  6. HD 101 and Genetic Testing
  7. Gene Positive: Now What?
  8. Increasing Your Support System
  9. Advanced Directives and Power of Attorney

12:15 lunch will be provided and at 1:00 we will assemble in the Main Auditorium.

Dr. Vicki Wheelock, MD, UC Davis will speak about recent research and other news regarding Huntington’s disease.

The address is UC Davis Health Education Building at 4610 X Street, Sacramento, CA.  Hours: 9:30 am to 3:30 pm.    We HOPE to see you there! 

Therese will be selling her memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, at the convention.  The book is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format. 100% of the profit from the book is donated to HDSA. 

Therese and John donated $9,015.00 to Huntington’s Disease Society of America (HDSA) which was the profit from her book since she published in April 2017.

 

 

 

 

 

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.

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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