Date(s) - Saturday, August 4, 2018
2:00 pm - 5:00 pm
The Calhoun's home
Medical science is coming tantalizingly close to having therapeutic agents to prevent the progression of FSHD, and perhaps even help regenerate muscle tissue for those who have lost it. This is not just my naïve or wishful thinking, but a sober judgment drawn from the presentations at the recent FSH Society Research Conference in Las Vegas.
I am sure you would agree with me that, as the community of individuals and families affected by FSHD, we need to do everything in our power to expedite the success of these promising medical developments, and that is why the FSH Society has embarked on an effort to create Volunteer Chapters around the country.
I have volunteered to coordinate the Mid-Atlantic Chapter, and I am lucky to be able to stand on the shoulders of a group of folks in our area who have already very taken many steps to advance the same goals. The chapters will organize to provide mutual support, educational activities and, of course, to raise funds so that the FSH Society can help bring closer the day when we defeat FSHD.
This letter is to invite you to a “wine, cheese and soda” gathering that will serve as the launch of our chapter. Deborah and Brad Calhoun have generously made their home available to hold this informal but critical get-together, and we hope you are able to join us.
We will get together on Saturday afternoon, August 4th, 2-5 PM, at the Calhoun’s home, 2615 Prices Distillery Rd
Clarksburg, MD 20871
Deb’s home phone: 301-865-0249
Deb’s cell phone: 410-215-3268
We’ve setup a “Zoom” Conference call for anyone who is not able to join in person (although we highly encourage you to attend!):
Join from Computer: https://zoom.us/j/8746919235
Or Telephone: 646 558 8656, Meeting ID: 874 691 9235
In a nutshell, this is what we hope to accomplish:
- Have an enjoyable afternoon as we get to know each other better;
- Hear from Beth Johnston, Chief Community Development Officer of the FSH Society, about recent scientific developments and the plans for regional chapters; and,
- Most importantly, spend some quality time planning activities for the chapter.
A few of us already brainstormed in Las Vegas and came up with the idea of a musical event as a fund-raiser, as well as some topics for speakers for future gatherings. But we need your input, so please bring your own ideas (and feel free to bring your favorite beverages or cheeses). Our chapter can only succeed if we all pitch in.
*** Please let us know if you can attend: RSVP to Robyn O’Leary (Robyn.Oleary@fshsociety.org). ***
I look forward to seeing those I already know, and meeting more new members.
Manuel R. Gomez
DRIVING DIRECTIONS FROM DEB: Although we have a Clarksburg zip code, we are in Frederick County. And everyone will want to reach Prices Distillery Rd from Rt 75/Green Valley Rd (GPS will sometimes route via Clarksburg Rd, which is not passable in most cars). That said, we’re actually very easy to reach. Just a few miles from either 270 or 70.