Featured post

2015 Spring/Summer issue of FSH Watch is out!

2015 SpringSummerFSHWatchCoverThe latest issue of our FSH Watch newsletter has just come out. You can download it here.

Highlights include:

  • The first evidence-based FSHD care guideline has been published. What is it? How does this empower the patient? (Page 1).
  • #FSHDStronger, our new awareness campaign (Page 1).
  • The decision to stop working: what you need to know. (Page 8).
  • Advancing clinical trial readiness for FSHD (Page 14).
  • Opportunities to volunteer. Research studies need you! (Page 16).
  • Why seek genetic testing for FSHD? (Page 24).
  • Breathing issues that every patient needs to understand (Page 26).
Featured post

Hot off the press: FSHD care guideline

Evidence-based, if incomplete, new guideline is a major step forward.

2014FSHD-Connect-byRV-190All too often, FSHD patients encounter doctors whose knowledge of the disease seems to be gleaned from dusty textbooks. A patient disabled by pain might be told that “pain is not associated with FSHD.” Or a physician may not think to order lung function tests, even though a patient feels too exhausted every morning to get out of bed.

One can hardly blame the doctors. Most have rarely, if ever, seen an FSHD patient, and between 15-minute consultations, they barely have time to breathe, much less study up on the latest research.

That’s why the publication today of a new care guideline for FSHD by the American Academy of Neurology (AAN) is a big deal. Continue reading

Doug & Gracie NYC to DC needs your support!

DougNGracieDC2NY

This September 6, Doug Craig, a retired scientist who has lived with FSHD since his teenage years, will be embarking on a 290-mile journey from New York City’s Columbus Circle to the steps of the U.S. Capitol in Washington DC riding on his mobility scooter. Accompanying him will be Gracie, a Bernese mountain dog adopted in 2013.

Why is he undertaking such an arduous journey? Doug explains: “I have been an active supporter of the FSH Society for many years, but, aside from making monetary donations, I have never taken it upon myself to raise funds for the organization. Of course, if I wasn’t willing to step up and try fundraising, then it wasn’t exactly fair to expect others to do it. Nevertheless, I managed to side-step the issue—that is, until now. It’s time I make a change and try to make a difference.Continue reading

Report from Sacramento

MimisCafeBy Bill Lewis III, MD

A new support group met for the first time in Sacramento, CA on August 19th at a centrally located restaurant.  We had 10 attendees from the larger Sacramento area.  About half the attendees were affected by FSHD and the other half were family members.  Ages ranged from twenties to retired.

The group was really positive and fun.  We introduced ourselves and spoke of when we were diagnosed, affected and unaffected family members, and how we were all still being very active socially and professionally.  One member thought the group might be more of a grief counseling group but was thrilled to find that we were quite jocular.  (Thanks Tim and Dave!  Keep up the good work.)  I suggested that we form a band, as many members were/are musicians.  I thought harmonica might be good!  (Y’all should get the joke.) Continue reading

International facioscapulohumeral muscular dystrophy research conference in Boston

Westin_waterfront_with_st-The_Westin_Boston_Waterfr-20000000001541819-500x375

Westin Boston Harbor Hotel, site of the 2015 FSH Society International Research Consortium workshop

The FSH Society’s 2015 Facioscapulohumeral Muscular Dystrophy (FSHD) International Research Consortium and Planning Meeting will convene in Boston this year, on October 5-6. This meeting is the largest annual forum for research professionals and clinical researchers to share the latest findings in FSHD research. For more information click here.

National Pro Grid League supports the FSH Society

npglThe National Pro Grid League (NPGL) announced today that it has selected the FSH Society as a beneficiary of its charity program. The men and women athletes in the NPGL, the world’s first coed professional team sport, perform at the highest level of athleticism, displaying feats of strength and agility well beyond the ordinary. The League is proud to assist non-profit organizations that support people who struggle with conditions that affect their strength and mobility.

As stated in their press release, each ticket sold for an NPGL match will benefit the FSH Society starting August 22-23 at the Anaheim Convention Center in Anaheim, California.  Purchase a NPGL match ticket at a discounted rate of $22 and $10 will immediately go to the FSH Society. Click here to purchase tickets. Continue reading

“I decided to fight back”

By Russell Caratenuto, FSH Society Ambassador

As a child I never second-guessed my ability to stick out my shoulder blades and make what my rus picfriends would call “wings”.

This difference never stopped me from being the most athletic child I could possibly be. Up until puberty, I was among the fastest, strongest, and most physically gifted in my age group. I excelled at football and was a strong kid. I was able to manage the endless running in soccer, football, and basketball. Continue reading

Carden Wyckoff on Living with Muscular Dystrophy

FSH Society Ambassador Carden Wyckoff recently created a series of posts on Avelist regarding misconceptions and living with FSHD. Below is her latest post on living with muscular dystrophy as she hopes to open minds and bring awareness to the various types of disabilities people live 2014FSHD-Connect-byRV-67with on a daily basis. For more articles, please click here for Carden’s website.

“I get many questions in regards to the way I compensate to carry out certain tasks or just general muscular dystrophy questions. This post gives light to that. MD affects everyone differently. I personally have FSHD, currently am not in a wheelchair but use assistive calf braces.” Carden Wyckoff

Living with Muscular Dystrophy

I get tired very easily. After walking down a hall, I’m like ok I need to sit or stop and catch my breath. This doesn’t mean I’m out of shape or lazy.

I look down at the floor when walking bc I have to analyze what I’m stepping on and determine if it will trip or help me. Continue reading

August Member Meetings!

We are west coast heavy this month.

CupsCoffee_Flickr-chichacha:CreativeCommonsOur meetings are steered by FSH Society volunteers and designed to serve the interests of individuals living with FSHD, their families, and friends. Our goal is to establish community support, networking opportunities, and guidance in comfortable environments. Please reach out to us anytime with suggestions, questions or concerns. If you would like to be a volunteer organizer for your community, please contact june.kinoshita@fshsociety.org.

Below are the upcoming Member Meetings in August. Click on each date for more information about the event.

August 19 – Sacramento Member Meeting

August 22 – Western Washington Member Meeting

August 29 – Oregon Member Meeting