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Helping Others

HD Research, Helping Others

Lundbeck

After I returned from the 2019 Huntington’s Disease Society of America  Convention in Boston in late June, I began wondering how and what the partners (sponsors) of the event contribute to the Huntington’s disease community.

Huntington’s disease is a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Parkinson’s and Alzheimers at the same time.  There is NO CURE.

On the back of the Convention Guide Book is a list of some of the partners. Today I’ll post about LUNDBECK.   lundbeck.com/us/about-us

Insight from Lundbeck’s Patient-Focused Approach to Business:

“Lundbeck offers financial support, and does it with a real understanding of what patient communities value and need: Patient groups are often strained for financial resources, which is why it’s not only important that we offer support generously, but in places where it can make the biggest impact. From many years of listening to patients, we have seen time and again how important it is for people to be able to connect with each other at patient group events and conventions. That’s why we introduced annual scholarships to help patients and their families attend the Huntington’s Disease Society of America (HDSA) Convention.”  

To read full article, visit:  lundbeck.com/us/our-commitment/community-involvement/moving-together-for-hd

Thank you to Lundbeck Pharmaceutical Company for offering scholarships to Huntington’s disease (HD) families so they are able attend the Annual HDSA Convention.  It’s so important for HD families to connect with the HD community so they do not feel alone.

We Can Never Lose HOPE…… 

         

Visit my Author Website at: https://www.theresecrutchermarin.com.  100% of the profits from the book, Watching Their Dance” is being gifted to the nonprofit HDSA.

Helping Others

Find Your Passion

Author Therese Crutcher-Marin

Finding your passion, and acting on it, I believe, is important to one’s happiness. Maybe it’s painting, writing, running, mentoring young people, teaching, helping the homeless, delivering meals to the elderly, volunteering for a your favorite charity, rescuing animals; anything that makes your heart and soul happy.

My passion is helping people. Most of my career was in healthcare, the last 10 years in a community hospice program. Focusing on a terminally ill patient’s pain and symptoms, allowing them to have the highest quality to their life for as long as possible fed my heart and soul. What is Hospice Care

Find your passion and incorporate it into your life. We live very busy lives, and adding a hour or two a week of your passion, can enrich your life.Inspirational-quotes-on-passion

We Can Never Lose HOPE………

$16.99

100% of the profit from the book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). Therese has donated $14,100.00 to HDSA which was the profit since the book was published in April 2017. amazon.com/Watching-Their-Dance

Helping Others

Homeless

I post quite often about KINDNESS on my personal Facebook Wall, as a reminder to myself and others.  Every Monday, John and I volunteer at a local Homeless Center to help and show kindness to those who are less fortunate than us.  I am humbled by these folks I interview because of their strength and resilience.  Many of them did not choose to be homeless; bad choices, drugs, alcohol lead them down a slippery slope and, for many reasons, they are unable to change their situation.

The picture of the young man is a client I usually interview on Monday’s.  I won’t mention his name for privacy reasons.  He did allow me to take his picture and share some things about himself and some of his goals.

He recognizes he has a problem with alcohol, wants help because he knows where the alcohol will ultimately lead him.  He used to be married, has several children, has set a goal to be sober and to reconcile with his ex-wife and work towards gaining visitation rights again.

When I don’t see him, I become concerned and I pray he is okay. After our volunteer day on Monday, John and I usually talk at dinner about the day. When I bring up this young man and my concerns, John says, “We can only do so much, Therese.”  And, in my mind I know that, but my heart says something different.

  

We Can Never Lose HOPE……..   

Helping Others, Kindness

A Thanksgiving Meal for Our Homeless Clients

John and I volunteer on Monday’s at a Homeless Center in Auburn; I interview the clients and John is the shower guy.  After being interviewed, they pick out clean clothes then go to the shower.  (There are 4 shower stalls and John cleans them after every client)  https://www.aubsda.org/

Yesterday, the center held a Thanksgiving Dinner for our clients.  It was awesome and I have never seen so many smiles at one time on their faces.

So, two weeks before the dinner, and in order to know how much food we needed, the interviewers, that’s me, asked clients if they would attend the dinner.

It nearly broke my heart when many of them nodded, then dropped their head and said, “Yes, thank you, thank you.  I don’t have anywhere to go to have a Thanksgiving meal”.

I’m posting this puzzle picture because it portrays how the homeless feel.  Forsaken, forgotten, lost, abandoned, isolated.  John and I feel that the homeless are part of our community, like a piece in a puzzle, and if we can make one day a little bit better for them, then we have helped our fellowman.

We Can Never Lose HOPE….

 

 

 

 

 

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.

Helping Others

In Memory of Pamela Gusland

I write this blog in the memory of Pam Gusland, a local therapist I saw for many years who helped me through tough times when Marcia and Cindy struggled with Huntington’s disease and the stress of living with John’s unknown gene status for Huntington’s disease wore me down.  http://www.hdsa.org 

Last year, after my book was complete and I began selling it, I looked up Pam because I wanted to give her a copy since she had suggested many times over the years to write my feelings down because writing had a healing quality.  I wanted her to know I had taken her advice and through the creative process of writing and creating a book, I had healed. Thank you Pam for the support you gave me.

It had been eight years since I’d seen Pam, 2009, so I stopped by her office and found she was no longer there.  I began searching online and much to my disbelief, she had died of breast cancer in April 2017.

Her obituary in the local Auburn Journal newspaper pays a wonderful tribute to her:

After a long battle with metastatic breast cancer, Dr. Gusland died on April 5, 2017 at the age of 69. She spent her final days at her peaceful home in the Sierra Foothills. Dr. Gusland (Pam) was innately compassionate. She dedicated her life to a career of helping others. After several years of teaching special education, Pam transitioned into counseling with a Ph.D. in Clinical Psychology from The University of Denver. For over thirty years, she helped hundreds of individuals transform their lives through her private practice in Southern California and later in Northern California, where she served the Auburn community for the past twenty years.   http://www.legacy.com/obituaries/auburnjournal/obituary.aspx?n=pamela-faith-gusland&pid=186158505  

We Can Never Lose HOPE…………

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  https://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

John & Therese donated $9,015.00 to Huntington’s Disease Society of America last December which was the profit from book sales since publishing in April 2017. 

 

 

 

Helping Others

Sacramento Huntington’s Disease (HD) Support Group

People have asked me why I attend the monthly HD support group in Sacramento when I currently do not have anyone affected by the disease?  Yes, my three sisters-in-law are gone, stolen from us by the insidious HD, but they are not forgotten.

I take part in the meetings in honor of Lora, Marcia and Cindy’s struggle with HD.  For over 25 years, John and I lovingly cared for and helped his three sisters through the disease process, without a support system, as neither a support group nor HDSA Center of Excellence existed in the late 1980’s and 1990’s in the Sacramento area.

Being present for those struggling with HD, listening, acknowledging their experience, pain, fears and doubts, and offering advice, gives me peace.  I will always have compassion in my heart for HD families, and have a need to help in some small way, because I know what they are going through.  If I could have talked with a HD family that was going through what John and I were experiencing, it would have been life changing for me.

If you’re considering joining a support group, this article might be beneficial to you:      http://davidsusman.com/2015/04/23/9-benefits-of-support-groups/  

Click on link for a larger picture of the list of support groups in Northern California:   https://www.ucdmc.ucdavis.edu/huntingtons/files/support_groups.pdf  

HDSA also offers free ONLINE SUPPORT GROUP MEETINGS.  To register please go to:   http://hdsa.org/osg/

We Can Never Lose HOPE………………

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  https://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

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

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Helping Others

TEVA Pharmaceutical Company

While John and I were on my book tour, promoting Watching Their Dance, and attending HDSA Team HOPE Walks, my table usually ended up next to the TEVA Pharmaceutical representatives. I was impressed with their marketing material on Austedo, the new treatment for Huntington’s disease patients who exhibit chorea, and their personalized support to patients who begin an Austedo drug regiment.    http://www.tevapharm.com/        

I compliment the TEVA representatives on their professionalism and sincere efforts to individually speak to HD families at these events.

The Teva Rep’s I met are:  (left to right) Lori Sorge and her coworker (I’m sorry I do not remember his name)-Wisconsin, Michael Morreale & Maurice Mulcahy-Ohio, Dianne Knapper-Michigan, and Lori Sorge again since I saw her at two events!  I also met a nurse, Jason, who held an inservice on Austedo after the Wisconsin walk, a nurse and rep at the Nebraska walk and a nurse at the Kansas walk. Great meeting you all!

      

We can never lose HOPE………………Therese

100% of the proceeds from Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a memoir/nonfiction book, is being donated to Huntington’s disease organizations around the world.  To purchase the book, go to Therese’s website: https://www.theresecrutchermarin.com and

Amazon    B&N     Kindle    Kobo      Nook 

and iBooks.

HDSA, Helping Others

Resources Available to Huntington’s Disease Families

Today, folks dealing with Huntington’s disease have many resources available; more than John and I did in the 1980’s and 1990’s.  Don’t get me wrong, HD is still the cruelest disease on the planet, but HD families and their loved ones are not as isolated as we felt.  Families have access to social workers, neurologists, HD clinics, information, support groups, conventions, Facebook Support Groups, webinars, and have opportunities to participate in studies and clinical trials to help research move forward. In the area of care, Huntington’s Disease Society of America has created a national network of resources and referrals that are unmatched by any other HD organization.    http://www.hdsa.org

http://web.stanford.edu/group/hopes/cgi-bin/hopes_test/    

https://en.hdbuzz.net/244

As I’ve traveled the Midwest this summer and attended HD Support Groups, Hope Walks, conventions, education days, I have seen the positive affect the availability of support has on HD families. Connecting with people who are living the same life as you is helpful and comforting.

In the 1980’s, when two of my sisters-in-law began showing symptoms, John and I felt alone, isolated without a support system.  Lora, John’s oldest sister, showed psychiatric symptoms around 1984 and drank herself to death by 1989. Marcia was diagnosed by neurologists at UC San Francisco Medical Center in 1986 and Cindy exhibited symptoms in 1992.  There were no support groups, Hope Walks or even a neurologist in the Sacramento California area who specialized in Huntington’s disease.

Basically, John and I learned as each sister showed symptoms, did the best we could and held on to each other for support. I also had a counselor for many years who helped me through the anticipatory grief I experienced for 25 years as each sister was diagnosed and Huntington’s disease slowly stole them from us.

Therese remembers her sisters-in-law in her memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. 100% of the proceeds from her book is being donated to HDSA in the U.S. and HD organizations around the world.

Go to Therese’s author website https://www.theresecrutchermarin.com or Amazon, B&N, iBooks to purchase the book.

Helping Others

Shana Verstegen and HD Workouts

Shana Verstegen is the former president of the HDSA Wisconsin chapter (2007-2013) and has served as a Huntington’s Disease Society of America national spokesperson since 2002. She received her bachelor’s degree in kinesiology and exercise science at the University of Wisconsin in 2002, and went on to earn the Log Rolling World Champion title in 2006, 2007, 2008, and 2012, and the Boom Run World Championship in 2008 and 2009.

Verstegen currently travels the country as a trainer for the American Council on Exercise – San Diego, TRX Training San Francisco, and Supreme Health and Fitness based in Madison, Wisconsin. She has helped raise public awareness about HD by making numerous television appearances on programs including the Tonight Show with Jay Leno, the Wayne Brady Show, Girls Behaving Badly (Oxygen Network), and a special ESPN feature about Huntington’s disease. In print she has been featured in venues including Oxygen, Women’s Physique World, Muscle & Fitness, Wisconsin Woman, and Newsweek magazine. While she says she has many things to be proud of, her work with HDSA in honor of her mother will always top that list. Her mother, Debby Martin, died from complications of Huntington’s disease in March 2013. Verstegen says that watching her mother lose her ability to move independently inspired her to live every day to the fullest with a focus on movement—from being the first female pole vaulter at the University of Wisconsin to winning a half dozen lumberjack titles. Verstegen is passionate about raising awareness toward finding a cure for Huntington’s disease, and fundraising to make that research and cure possible.

For more of Shana’s video’s on HD workouts go to:    http://hdsa.org/hd-workout-tips/    

Shana and her husband, Peter, are hosting three HDSA Team Hope Run/Walks in 2017.

Fox Valley August 13 https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1154   

Eau Claire August 19   https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1143  

Madison July 1  https://hdsa.donordrive.com/index.cfm?  fuseaction=donorDrive.event&eventID=1258

Therese’s book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s can be purchased on:   https://www.theresecrutchermarin.com  

We can never lose HOPE………….Therese