Browsing Tag

#cure4hdandjhd

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

Fundraising, Helping Others

Volunteer at the Nonprofit, HDSA Northern California Chapter

If you are interested in volunteering for the Huntington’s Disease Society of America Northern California Chapter, there are many opportunities where you can help. http://northernca.hdsa.org/

Here are a few ways you can contribute to improving the lives of  individuals and families affected by Huntington’s disease (HD):

* Participate in the planning and execution of Chapter events: Annual Team Hope Walk, annual Chapter Convention, and Kaiser Permanente Education Days
* Provide transportation to HD families
* Provide light housekeeping/childcare for HD families                                                                          *Participate in clinical trials and observational studies
* Make phone calls to donors to thank them for their contribution
* Serve on the HDSA Northern California Chapter Board of Directors                                                                      *Post on NorCal Chapter social media platforms: Facebook, Twitter, Instagram                                                    *Assist with marketing/publicity/outreach    

http://hdsa.org/volunteer-opportunities/  

                               

We Can Never Lose HOPE…………….

Author Therese Crutcher-Marin

Therese has been a member of the HDSA Northern California Chapter Board of Directors since January 2017.  She will be president of the Chapter in 2020.

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-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.

 

 

Taking Care of Yourself

Free Online Huntington’s Disease Support Group

Did you know Woody Guthrie had HD? He did!

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.

Medical News Today Article: What is HD?  

HDSA Online Caregiver Support Group     

This HDSA group is open to caregivers to a loved one with HD who does not have access to an in person group because of distance, time constraints or whatever.  If it is easier for you, please register. The group will meet monthly with a changing leader and changing members due to expanded geography. To sign up:   https://www.supportgroupscentral.com/join_as.cfm?cid=27

We Can Never Lose HOPE………...

I will be selling my nonfiction book Watching Their Dance at the HDSA Annual Convention in Los Angeles this week.  HDSA is receiving 100% of the proceeds.

Hope, Huntington's Disease

Great Time to Get Involved

Today is the last day of May; HD Awareness Month. With the publicity generated this month by HD organizations and community members, hopefully, we have heightened awareness of this horrific disease that devastates HD family for generations.  

I wish to thank Dr. Carroll, a gene positive HD advocate and a devoted, brilliant HD researcher, who has done so much for Huntington’s disease.  Jeff says it a great time to become involved in HD research!  

Dr Jeff Carroll, PhD — Boston, USA  https://westerntoday.wwu.edu/features/psychology-s-jeff-carroll-awarded-new-100k-grant-to-research-huntington-s-disease  

 Article, Slightly long CAG repeats are more common than we thought.

For more information about Huntington’s disease please visit  http://www.HDSA.org  & join the fight! To for more information about HD Clinical Trials please visit  http://www.HDTrialFinder.org 

#LetsTalkAboutHD    #HDSAFamily

HD Awareness

Memoir Heightens Huntington’s Disease Awareness

HDSA Northern California Chapter Convention/Education Day

I wrote and published the book, Watching Their Dance, for several reasons and the first reason was to heighten Awareness of Huntington’s Disease.

The book is a tool for others to use to create/heighten Huntington’s disease awareness. The story reads like a novel and appeals to a large audience, especially readers who enjoy a love story with a difficult challenge.  (It’s John and my love story while living in the shadow of HD).

To successfully fundraise for a rare, fatal, hereditary brain disorder, with no cure, like Huntington’s disease, creating awareness is vital.  How can someone be persuaded to give, if they know nothing about the cause (disease)?

So, I ask the many HD community folks who purchased the book, many thanks, to pass it on to someone who knows little about the disease.   What is Huntington’s disease?

I found this interesting article on 15 Way to Skyrocket Awareness for a Cause, and I’m going to implement a couple of the suggestions into my outreach plan.   https://www.youcaring.com/blog/2017/how-to-raise-awareness-for-a-cause

1. Organize educational events

2.  Host fundraising events      

3.  Set a world record                           

4. Be picture perfect

5. Host a video contest

6. Like and comment to win

Branding Your Cause

7. Be consistent

8. Design and distribute swag

9. Boost social media awareness

Content 

10. Produce content others find valuable        

11. Make informational pamphlets

12. Write a press release

Issue Challenges 

13. Make a viral challenge video

14. Challenge your coworkers

15. Take on a challenge

May is Huntington’s Disease Awareness Month

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 HDSA Annual Convention, June 7-9.  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. 

In December, Therese and John donated $9,015.00 to Huntington’s Disease Society of America (HDSA) which was the profit from 2017 book sales.

#LetsTalkAboutHD   #WeCanNeverLoseHOPE  #WatchingTheirDance  #HDSAFamily

Photo by symphony of love on Foter.com / CC BY-SA

 

 

 

 

 

 

Grief

Anger, a Natural Reaction to Grief

I have to admit anger started seeping out of my pores when Cindy became symptomatic.  She was the third sister-in-law to fall prey to this monster; Huntington’s disease.  When I started noticing symptoms, I was in denial and ignored it; I didn’t even talk to John about it, but soon it was hard to disregard. As she declined, my anger got worse; I just wanted to take a baseball bat to the monster and make it hurt like I hurt.  What is HD

For those experiencing this emotion, know, anger in itself is a natural reaction to grief and loss; it’s a normal part of grief.  If you are feeling this way, please seek help from a counselor and/or attend a Huntington’s disease support group. 

Article on Grief and Loss             Article on Anger in Bereavement  

Article-griefrecoverykit.com/    3-ways-to-work-through-the-anger-stage-of-grief/

The book, Griefland is written by a friend of mine, it’s a great book, and it’s available at  https://www.lulu.com/shop/search.ep?keyWords=griefland&type=

Unfortunately, Huntington’s disease causes many losses to a person with the disease; i.e., loss of independence, loss of being in control, loss of a job, etc. Watching a loved one decline may cause anger issues with the care partner/family.

I feel blessed that by writing my story, it was a healing journey, I was able to release the anger I harbored toward HD.

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 profits from the book is being donated to Huntington’s Disease Society of America (HDSA).

We Can Never Lose HOPE………….

                        May is Huntington’s Disease Awareness Month

#LetsTalkAboutHD  #HDAwarenessMonth

#HDSTRONG #HDSAFamily