Tag Archives: FSHD

Help us promote World FSHD Day with a selfie video!

JUNE 20th is WORLD FSHD DAY!

World FSHD Day


Help us raise public awareness of FSH muscular dystrophy by making a video selfie, urging everyone to take part in this year’s World FSHD Day awareness campaign. Orange Slice SmileRaisingAware

Orange is the international color of World FSHD Day – so we’re using an orange slice to spread the word. All you need to do is make a short video of yourself sharing the message using the script below. Feel free to adapt the script to your own style and voice. Try to get good audio quality, then send your video by DropBox to June.Kinoshita@fshsociety.org. Continue reading

Mom and Daughter with FSHD featured in Muscular Dystrophy News!

Diane and Lexi PappasTwo of our members, Diane and Lexi Pappas, were featured in Muscular Dystrophy News, sharing their struggles about living with FSHD.  Diane is Lexi’s mother and the two live in Massachusetts.  Lexi shares both the difficulty she had about opening up about her disease and the sense of liberation she has gained from raising awareness: “It’s actually really freeing, knowing that all these people know about my disability.  It means I don’t have to hide it anymore.  The more awareness I can spread, the more research we can get for the FSH Society.”

Diane says this condition has made the two of them closer through their shared experience: “My daughter has actually inspired me to be more open about our disease and she is definitely braver than I ever was growing up.”  Both Diane and Lexi talk about attending the FSH Society’s patient conference last November and the challenges of living with FSHD.  For the whole story, read here.

Search for Chief Executive Officer

The FSH Society is seeking a committed, experienced leader to serve as Chief Executive Officer (CEO). The CEO will lead the Society in meeting its important mission: to serve as a source of information and support for all patients and families with FSHD; to act as a driving force in the development of research directed towards treatment and cure of FSHD; and to act to bring support to patients and research for FSHD through effective engagement of governmental and private sector organizations and entities.

Please review the CEO Position Announcement for further details. If you wish to apply, please send your resume and cover letter to Susan Egmont, Egmont Associates.

 

Johns Hopkins Studies

Johns Hopkins and the Kennedy Krieger Institute are currently recruiting for two studies!  Volunteering for studies like this helps provide researchers with the information they need to provide better treatments, understand the mechanisms of the disease, and search for a cure.

For Family Members (no travel necessary!):

The Johns Hopkins Hospital and the Kennedy Krieger Institute are looking for first-degree relatives of FSHD patients ages 35 and older who do not currently show symptoms.  Volunteers will be asked to give a blood draw, which can be performed at any local lab.  The blood draw, the genetic test, and shipping will be covered by the study.

Interested individuals should contact Pegah Dehghan: dehghan@kennedykrieger.org.

Study Protocol Number: NA-00019985. 

For Patients: Continue reading

Imaging study shows positive effects of exercise and CBT on muscle degeneration

In 2014, a Dutch team reported that aerobic exercise training (AET) and cognitive behavioral therapy (CBT) decreased fatigue and improved the quality of life significantly in FSHD patients. Now, the same group has published a study demonstrating that not only did patients given AET or CBT feel more energized and active, but that their muscles degenerated more slowly than in patients who received standard care.

Strikingly, the effect was largest in the CBT group. CBT often focuses on how your thoughts can influence your behaviors and the choices you make. It is often used to treat patients with chronic illness to improve their functioning in their daily life. Continue reading

Ask the Physical Therapist: Car Accidents and FSHD

The following is a transcript of a question-and-answer session, conducted over the FSH Society’s Facebook page, with Julie Hershberg, PT, DPT, NCS. Hershberg is a physical therapist who is a Board Certified Neurologic Specialist.  She practices at [re+active] physical therapy & wellness and is an instructor in Doctor of Physical Therapy program at USC.

I have FSHD and have been in two vehicle accidents—-one in 2001 and one in 2014. Both accidents resulted in soft tissue/whiplash injuries affecting neck, shoulder, arm, spine and back areas. I am wondering if you know of any articles related to soft tissue/whiplash injury and recovery in people who have FSHD (or a similar conditions)? I am currently receiving physiotherapy, massage therapy, exercise and pool therapy (the latter two provided by a kinesiologist). I am the first client with FSHD that any of the therapists have seen and I’ve given them some articles about FSHD and exercising with FSHD but none address accident injury or treatment.

I reviewed the literature in this area and there has not been research regarding FSHD or similar disorders post whiplash injury.  In looking at the research of whiplash in general, there is also not conclusive evidence that pre-existing muscle weakness or postural deformities contribute to pain or disability post injury.    In that case, I don’t think there would be anything recommended from research for the therapists to do differently in managing your whiplash.  I would just guess that it will likely take longer for you to heal due to potential pre-existing trunk and shoulder weakness.  Continue reading

Ask the Physical Therapist: Asymmetrical Wasting and Braces

The following is part of the transcript of a question-and-answer session, conducted over the FSH Society’s Facebook page, with Julie Hershberg, PT, DPT, NCS. Hershberg is a physical therapist who is a Board Certified Neurologic Specialist.  She practices at [re+active] physical therapy & wellness and is an instructor in Doctor of Physical Therapy program at USC.

With wasting occurring asymmetrically (right/dominant arm faster than left), how should I modify my exercise regimen? Should I consider wearing some kind of undergarment support, or is it better not to give the muscles this support and make them work?

Continue reading

Ask the Physical Therapist: What are the best exercises for different muscles?

The following is part of the transcript of a question-and-answer session, conducted over the FSH Society’s Facebook page, with Julie Hershberg, PT, DPT, NCS. Hershberg is a physical therapist who is a Board Certified Neurologic Specialist.  She practices at [re+active] physical therapy & wellness and is an instructor in Doctor of Physical Therapy program at USC.

Q. What’s the best exercise for arms unable to move above shoulder height?

A. Best exercise for arms unable to move above shoulder height: oh, yes—a very big question! Again, this depends on how much movement and strength you have, so I cannot give specific advice, but I will offer these general suggestions. I often recommend exercises in which you do not have to move against gravity. A good example is a shoulder exercise lifting the arm to the side while lying down. This provides good scapular support, and you don’t have to lift against the force of gravity. Continue reading

Looking Back on a Year Full of Strength, Part 3 of 3

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As we come up on the last days of 2016, we are taking one final look back on the incredible year it has been, and one last moment to recognize those who have shared their inspirational stories, strength, and commitment to continue to do the things that they love. As we mentioned in Part 1 and Part 2 on our blog, we are sharing stories we received throughout the year from fellow FSH Society members that demonstrate how they won’t let FSHD stand in their way.

Your support is life-changing to those in the Society – and with your continued dedication to finding a treatments and a cure.

Continue reading below to hear the stories of Ryan, Aditya, and Lynne on how they are raising awareness, doing what they love, and how the Society has helped them along the way!

Continue reading

Looking Back on A Year Full of Strength, Part 2

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As we continue to look back on the incredible year we have had, we want to recognize others who have shared their inspirational stories, strength and commitment to continue to do the things that they love. As we mentioned in our first post, throughout the remainder of 2016, we will be sharing these stories from fellow FSH Society members that demonstrate how they won’t let FSHD stand in their way.

Your support is life-changing to those in the Society and with your continued dedication to finding a cure, we know that this challenge is possible. Continue reading below to hear more from Kristen, Tom, and Zabrisa on how they are raising awareness, doing what they love and how the Society has helped them along the way!

Continue reading