HDSA

THE 36TH ANNUAL HDSA CONVENTION GOES VIRTUAL!

Author Therese Crutcher-Marin

At the end of January Huntington’s Disease Society of America (HDSA) sent a survey to individuals who attended recent HDSA Annual Conventions to collect important feedback as they planned the 36th Annual HDSA Convention scheduled for Spokane, Washington this June.  What is HD?

After HDSA reviewed the survey results, working with the Convention host hotel, and consulting Washington State guidelines (current and projected) related to events, HDSA have made the difficult decision to once again host the 36th Annual Convention virtually. So, mark your calendars to join HDSA virtually on June 10th-13th, 2021.  https://hdsa.org/news/the-36th-annual-hdsa-convention-goes-virtual/

As much as HDSA would have loved to have been in Spokane with all of us in June, the health and safety of HDSA families remains their top priority. Plans are already underway for another world-class virtual event which will reach more people around the globe than ever before and will ensure that families around the world have free access to our incredible HDSA Annual Convention program.

Please visit https://hdsa.org/about-hdsa/annual-convention/2020-2/ to see the programs presented at the Virtual 35th Annual HDSA Convention. 

We Can Never Lose Hope…..

My HD Advocacy and Author website is:  https://theresecrutchermarin.com

 

HD Clinical Trials, HD Research

You’re Invited to the Virtual Education Day Hosted by HDSA UCSF Center of Excellence

Author Therese Crutcher-Marin

The nonprofit, Huntington’s Disease Society of America (HDSA), mission is dedicated to improving the lives of everyone affected by Huntington’s disease (HD).  HD is a rare, fatal, genetic brain disorder that has the symptoms of ALS, Alzheimers and Parkinson’s at the same time and there is NO CURE.  What is HD?

I’m the Chair for the HDSA San Francisco Bay Area Affiliate and we partner with UCSF Center of Excellence on the upcoming Virtual Huntington’s Disease Education Day.  It’s FREE to attend on March 17th, 2021 from 6 pm to 8:30 pm.

To register, visit:  https://hdsa-org.zoom.us/meeting/register/tJAuduuspjIqE9eZw7hkeztIu-gLZGnwoDh_

We Can Never Lose HOPE…….

 

HDSA San Francisco Bay Area AFFILIATE, Volunteers

HDSA San Francisco Bay Area Affiliate Can Use Your Expertise

Author Therese Crutcher-Marin, HD Advocate

“The best way to find yourself, is to lose yourself in the service of others” –Gandhi

Volunteers are the lifeblood of our mission work at the nonprofit, Huntington’s Disease Society of America (HDSA)Huntington’s Disease is a rare, fatal, genetic brain disorder with NO CURE.  41,000 Americans have the disease and 200,000+ live at risk.  What Is Huntington’s disease? 

Volunteers are critical in helping HDSA soar to new heights of success since its inception nearly 5 decades ago.  

  • Volunteers contribute their time, passion, and skills, while bringing invaluable enthusiasm and talent to their work at HDSA. https://sanfrancisco.hdsa.org/   OR facebook.com/hdsasanfranciscobayarea
  • Volunteers embrace HDSA’s strategic plan to help carry out our plan of work which includes coordinating nationwide fundraising events and becoming Huntington’s Disease (HD) advocates in their communities.

To review volunteer opportunities where you can use your expertise, please visit VolunteerMatch website at:  volunteermatch.org   OR visit “How To Get Involved With HDSA

 

 

 

We Can Never Lose HOPE……

HDSA Fundraising events, HDSA San Francisco Bay Area AFFILIATE

Stretch It Out For Huntington’s Disease-A Gentle Yoga Class

JOIN US FOR A VIRTUAL YOGA CLASS

AMANDA SHREWSBURY, INSTRUCTOR

OPEN TO ALL LEVELS AND ABILITIES!

Saturday, MARCH 6, 2021 10:00 AM TO 11:00 AM

Register Here:  https://sanfrancisco.hdsa.org/yoga  

(Zoom link will be sent the morning of the event)

Amanda Shrewsbury has been teaching yoga since 2014 and is a 200-Hour Registered Yoga Teacher (RYT) through Yoga Alliance. Over the years she has taught yoga to individuals of all ages, and has experience teaching a variety of yoga styles including power yoga, gentle yoga, and chair yoga. Her primary goal as a yoga instructor is to connect others with the ability to be gentle with their mind and body. She has been involved with the HD community since 2020 as a volunteer, and is a health advocate who has plans to obtain a Master’s degree in Genetic Counseling to continue to give back to others.

We Can Never Lose HOPE……

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate, the Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author.  My HD Advocate/Author website is https://theresecrutchermarin.com

 

 

 

HDSA San Francisco Bay Area AFFILIATE

Huntington’s Disease Education Day Hosted by UCSF Center of Excellence

The HDSA Center of Excellence 

at University of California, San Francisco Medical Center

is Hosting an FREE EDUCATION DAY ON MARCH 17th – 6:00 pm-8:30 pm

              Register here:  http://sanfrancisco.hdsa.org/edday

Topics Presented:

  • Update on Clinical Trials-Dr. Cameron Dietiker
  • CRISPR- Bruce Conklin, MD
  • Medications for Huntington’s Disease Patients-Dr. Alexandra Nelson
  • Basic Science-Julia Kaye, PhD/Steve Finkbeiner, PhD of the Finkbeiner Lab

UCSF Center of Excellence Team: (not all team members are shown)

Zoom Link will be emailed to the registered participants the day before the event.

         

HDSA Fundraising events, HDSA San Francisco Bay Area AFFILIATE

Stretch It Out For Huntington’s Disease-A Gentle Yoga Class

JOIN US FOR A VIRTUAL YOGA CLASS

AMANDA SHREWSBURY, INSTRUCTOR

OPEN TO ALL LEVELS AND ABILITIES!

Saturday, MARCH 6, 2021 10:00 AM TO 11:00 AM

Register Here:  https://sanfrancisco.hdsa.org/yoga  

(Zoom link will be sent the morning of the event)

Amanda Shrewsbury has been teaching yoga since 2014 and is a 200-Hour Registered Yoga Teacher (RYT) through Yoga Alliance. Over the years she has taught yoga to individuals of all ages, and has experience teaching a variety of yoga styles including power yoga, gentle yoga, and chair yoga. Her primary goal as a yoga instructor is to connect others with the ability to be gentle with their mind and body. She has been involved with the HD community since 2020 as a volunteer, and is a health advocate who has plans to obtain a Master’s degree in Genetic Counseling to continue to give back to others.

We Can Never Lose HOPE……

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate, the Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author.  My website is https://theresecrutchermarin.com

 

 

 

HDSA San Francisco Bay Area AFFILIATE, Huntington's Disease

SAVE THE DATE-Education Day Hosted by UCSF Huntington’s Disease Center of Excellence

TO THE SF BAY AREA HUNTINGTON’S DISEASE COMMUNITY

The HDSA Center of Excellence 

at University of California, San Francisco Medical Center

is Hosting an FREE EDUCATION DAY ON MARCH 17th – 6:00 pm-8:30 pm

                                            Register here:  http://sanfrancisco.hdsa.org/edday

Topics Presented:

  • Update on Clinical Trials-Dr. Cameron Dietiker
  • CRISPR- Bruce Conklin, MD
  • Medications for Huntington’s Disease Patients-Dr. Alexandra Nelson
  • Basic Science-Julia Kaye, PhD/Steve Finkbeiner, PhD of the Finkbeiner Lab

We Can Never Lose HOPE…

 

HDSA Fundraising events, HDSA San Francisco Bay Area AFFILIATE

Stretch It Out For Huntington’s Disease-A Gentle Yoga Class

JOIN US FOR A VIRTUAL YOGA CLASS

AMANDA SHREWSBURY, INSTRUCTOR

OPEN TO ALL LEVELS AND ABILITIES!

Saturday, MARCH 6, 2021 10:00 AM TO 11:00 AM

Register Here:  https://sanfrancisco.hdsa.org/yoga  

(Zoom link will be sent the morning of the event)

Amanda Shrewsbury has been teaching yoga since 2014 and is a 200-Hour Registered Yoga Teacher (RYT) through Yoga Alliance. Over the years she has taught yoga to individuals of all ages, and has experience teaching a variety of yoga styles including power yoga, gentle yoga, and chair yoga. Her primary goal as a yoga instructor is to connect others with the ability to be gentle with their mind and body. She has been involved with the HD community since 2020 as a volunteer, and is a health advocate who has plans to obtain a Master’s degree in Genetic Counseling to continue to give back to others.

We Can Never Lose HOPE……

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate, the Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author.  My website is https://theresecrutchermarin.com

 

 

 

Love

A New Love In My Life

February is the month of love – a time for Valentine’s Day and remembering love – emphasizing the importance of love in our lives.

As we wind down February, the month of love, John and I have a new love in our lives who entered our world on February 10, 2021 weighing in at six pounds one ounce and 21 inches long.

Her name is Marlena Cynthia Joan Marin, our first grandchild, and the new LOVE of our lives.  John and I spent several days with our son, Keith, and Fran, our daughter-in-law, once they came home from the hospital with Marlena. 

The minute I saw her, I fell in love with everything about her; her name, her angel face, her precious, little perfect body, her eyes that look like John’s father’s eyes, a deep blue.

At this time, she is a little miracle in this chaotic world we live in. She has reminded me of the power of love; it strengths us, feeds us, energizes us, and being deeply loved by someone gives us strength, while loving someone deeply gives us courage.

There is no greater power than loveLove has the ability to heal the world.

Love is pure and decent, innocent and  true.

  We Can Never Lose HOPE………..

Grief

The Grief Of A Nation-The Loss of Our Loved Ones

A year ago, like all Americans, we were living a normal life, working, going to the gym, picking up our children at school, going on vacations.  During this time my 90-year-old father, James Keith Crutcher, was showing signs of dementia, forgetfulness, an unsteady gait, and, unbeknownst to my sister and me, taking many falls in his home.

Thus began the rapid decline of my father’s health and the anticipatory grief that was growing in my heart.  At the same time, COVID-19 was spreading like wild fire, the American people were quarantined and the number of Americans dying increased daily.

This week, America reached 500,000 deaths, and counting, from the Coronavirus, and we are a nation in deep grief. I mourn the loss of my father and at the same time, the loss of 500,000 American’s.

Last Monday, the United States of America took time to recognize the loss of our loved ones for which I’m  grateful.

My father died on December 13, 2020 after taking a bad fall and breaking his neck.  Unfortunately, he had to have surgery, or be paralyzed from the neck down.  Because of the pandemic, my family couldn’t be with my dad when he was in the hospital.  We got him home with hospice care and he died three days later.

I pray with time, our nation can recover from all we have lost and heal from this devastating COVID-19 pandemic.

We Can Never Lose HOPE…..

Author Therese Crutcher-Marin

I’m a Huntington’s Disease Advocate, the Chair for the Huntington’s Disease Society of American San Francisco Bay Area Affiliate, a blogger and an author.  My website is https://theresecrutchermarin.com