Volunteer Spotlight – Rick Whitehead – Knoxville, TN 

by Beth Johnston

---

Meet Rick Whitehead from Knoxville, Tennessee! 

Rick has volunteered with the FSHD Society in several different capacities, and most recently is serving as the Facilitator for our Weekend Wellness Gathering Place community that meets on the last Saturday of the month.  

Tell us a little about yourself? 

I have an older brother by 8 years who first learned that these unexplained symptoms were actually FSHD.  I was in my early 50’s then, and am now 70.  I am still ambulatory, and am trying to travel while I still can.  When I can no longer do that, then I very happily still have the artwork that I can do, and a bridge playing community that fulfills that desire for a challenging game.  I do plan to go to Madrid next year, where I used to live for most of the 80’s between 3 regions there.  I’m fluent in Spanish, and have traveled to many Spanish speaking countries, and there are still many to discover.   

---

How did you become involved as an FSHD Society volunteer, and your current role? 

My first memory of volunteering was actually with the MDA and their Shamrock campaign.  I liked that because we simply went out to thank those sponsors directly for encouraging the donation of buying a Shamrock.  Through information and contacts at the FSHD Society, I participated in clinical trials – first in Rochester NY and after in Kansas City.  I went to several FSHD Connect conferences, and have met with local people with FSHD.  It’s nice to have a local community.  During the pandemic, I began attending the zoom meetings with our great moderator June Kinoshita, who gradually just got many of us more involved and certainly more friendly with one another. That I like a lot, getting to know so many that can understand and appreciate so readily what the experience is like. 

There is no comparison in how significant the FSHD Society is for us with FSHD.  Anyone with FSHD or knows someone with FSHD or suspected FSHD, should contact the Society.  The website is full of blogs, and videos that offer so much information about so many topics. And the local chapters around the US and Canada really give people that one-on-one connection. Those who lead the Society are very earnest in their desire to help us on so many levels.  I’ve been involved in many clinical trials which have brought me to neurologists who are most knowledgeable and do research for FSHD.  The FSHD Connect Conference that is every two years for a face-to face that has so many benefits, and most importantly the latest up to date research regarding possible treatments from around the world, and information offering solutions on dealing with FSHD. 

As you can see, I greatly appreciate all that the Society is doing for our community of FSHD people. I’m becoming more involved over the years with great excitement for being close to those most interested and invested in our care.    

---

What would you tell someone thinking about getting more involved?  

The rewards are great for those who get involved with the FSHD Society – so much to learn, to share, and befriend.  We all have hope, and are striving ahead. So many friends now, that I so greatly enjoy.   

The Society is rich, especially for the people that serve and make up the community. 

I do welcome people to contact me directly, and it will always be private.