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Share to be Aware: FSH Society Launches #CureFSHD Campaign

fsh_web_image_1The FSH Society is excited to announce that today we will be kicking off our new campaign, #CureFSHD! The purpose of the campaign is to spread awareness and educate people about FSHD. We will begin sharing impactful photographs of people with FSHD overlaid with little-known facts, warning signs and impacts of FSHD. Each day, on our Twitter handle, @FSHSociety, we will release a new photo to teach the public about the realities of this disease. We will promote the campaign over our social media channels and we encourage everyone to participate.

As Carlos Romero, a national champion paraclimber with FSHD from Seattle, notes: “These images show the pain and struggle we fight through on a daily basis. It is such a simple task to share these images over social media; however, the impact it will have and the awareness they will bring to FSHD is truly remarkable.”

How to participate (two options):

We can broaden our reach even further with the help of all of you! Please encourage your friends and family to participate in the campaign and share the images that impact them. Help us spread awareness about the symptoms and facts about FSHD and set us on the path to #CureFSHD!

Twitter: @FSHSociety
Facebook: facebook.com/FSHSociety
Instagram: instagram.com/fshsociety/

FSH Society’s Daniel Perez presents to MDCC

Daniel Perez

Daniel Perez

Daniel Perez, president and CEO of the FSH Society, represented the FSHD community at last week’s meeting of the Muscular Dystrophy Coordinating Committee (MDCC). The day-long meeting was held on March 17, 2015, at the National Institutes of Health (NIH) in Bethesda, Maryland.

Perez served on the MDCC from 2001 to 2010 and was re-appointed in 2014 with the unanimous endorsement of the FSHD Champions, an international alliance of FSHD advocacy and funding organization.

In his 2015 presentations to the MDCC, Perez highlighted the relatively small percentage of NIH grants awarded to FSHD projects–$7 million for FSHD out of the total $79 million awarded for all muscular dystrophies—and contrasted this to the impressive advances the field has achieved despite the lack of funding.  Continue reading

The Tale of the Piggy Back Spartan Race

Re-posted with permission from Spencer Wyckoff

Before the Race

Three ordinary people set out toward the Georgia International Horse Park on Saturday March 7, 2015 around 7:00am.  Our bellies were full of steel cut oats and maple syrup – fuel for the day’s main event – the Atlanta Sprint Spartan Race.  The crew: Dani Pasierb, Carden Wyckoff, and Spencer Wyckoff were listening to Barbell Shrugged’s episode #147, where they showcase Tony The Fridge – an ordinary man doing extraordinary things.

Quick aside:  Tony the Fridge raises money for curing cancer through running ultra marathons with a large 42kg fridge on his back.  There are so many pearls of wisdom in this particular podcast with Tony, however my favorite part is when he speaks about the two other voices inside his head. 1 voice says he’s done enough, it’s ok to stop, go ahead and pat yourself on the back.  The other voice says no, keep going, don’t stop ever, do more do more do more.  During the races, Tony tells his interviewers “I take both of these (subconscious) voices, and I tell them to shut the $&%# up.”  From what I can tell, Tony is a master of getting into a mindset that solely focuses on things that matter in the present – focus on breathing, focus on each step – over and over again – he paints this picture of laser like focus when doing his races.

spencer1

Back to the Tale of the Piggy Back Spartan Race… So we arrive around 8:00am, an hour before our start time (or so we thought).  The venue resembled a large music festival type event, with lots of people, vendor booths, dj booth, course obstacles, and mud… yes LOTS of MUD.  We each became instantly excited and a bit nervous about what we were getting ourselves into. Continue reading

April patient meetings from coast to coast

Are you eager to meet other patients and learn about the latest research? Several meetings are being planned for next month. Find out if there’s one near you:

April 12, 2015 3:00 PM EST. An FSHD gathering in Hobe Sound, Florida

  • Join host Mimi Brown and others living with FSHD for an afternoon of socializing, discussion and fundraising. Executive Director June Kinoshita will be speaking.
  • For more details and to sign up, click here.

April 14, 2015 7:00 PM: Denver FSHers meeting, Denver, Colorado

  • This meeting will discuss medical resources, advocacy and fundraising ideas.
  • For more details and to sign up, click here.

April 18, 2015 1:00 PM: Patient Network, Los Angeles, CA

  • A gathering for socializing, advocacy, and physical therapy.
  • For more details and to sign up, click here.

Click here to check out our regional meetings list to find out about groups near you.

How my progressive disease taught me that it’s okay to be human

kristin duquetteBy Kristin Duquette

My body constantly changes and at times, I feel like there’s nothing I can do about it.

Every time I lose another piece of mobility, my mind flashes back to memories and experiences of loss contributed to my body and this condition. I break down because sometimes it’s just too much to handle. It’s a crippling feeling to realize that you’re doing everything you can to halt a progression and it still creeps in. I refuse to be in denial, but I also refuse to feel defeated and hopeless about my situation. Continue reading

Reflecting on FSHDselfies

MiaArchuleta

Mia Archuleta’s #FSHDselfies

By Mia Archuleta, Granbury, Texas

I have been thinking about people wondering exactly how the FSHDselfies have brought awareness to FSH dystrophy. Here are just a few examples of my journey since posting them.

I attend a Bible study group that I absolutely love. In the year that I have been there, everyone has welcomed me with open arms. It was a little odd because no one really saw me as “the girl in the chair.” They have always seen me as Mia. I tend to be an open book, but the subject of FSHD never really came up. No one felt that they couldn’t ask me why I was in a chair, they just never thought it was necessary because it is just a part of me, like a pair of eye glasses, or hearing aids or any other assistive equipment.

When I began posting selfies, a lady at Bible study noticed that it concerned FSHD. She asked me about it and through the course of conversation, she realized that FSHD was exactly what one of her previous students was living with. She mentioned the girl’s mother and over time I lost track of the name and forgot to do a Facebook search. Just this last week the mother, Angela Jackson was added to this group!! What a small world. We are trying to arrange a lunch date, waiting for the rain to stop so we don’t all end up a soppy mess. I cannot tell you how excited I am that with the post of a simple selfie, I will be making contact with another FSHD family. We live in a small town and it’s encouraging to know that someone else will understand the challenges unique to FSHD. Continue reading

FSH Watch Winter 2015 issue is out

Highlights include:fshd2015WINTER_WATCH

  • Summary of our 2014 FSHD Connect Conference held in Boston.
  • Senator Elizabeth Warren addresses the 2014 FSHD Connect Conference.
  • The essential role epigenetics plays in FSHD.
  • Meet the new FSH Society staff members.
  • The effects of DUX4 expression on muscle cells.
  • The FSH Society’s 2014 International Research Meeting.
  • Antioxidant supplement trial results.
  • New FSHD clinical trials and studies.

Download and read the entire issue here.

Remembering Carol Perez

Carol Perez and her husband Charles

Carol Perez and her husband Charles

We note the three-year anniversary of Carol Anne Perez’s death at age 76, on February 3, 2012, from respiratory complications of FSHD. Many patients remember Carol as the person on the other end of the phone line when they would call the FSH Society for help and a sympathetic ear.

She changed many people’s lives. As one such patient attested: “If it wasn’t for Carol, and if it wasn’t for the FSH Society, I truly believe I would not be the person I am today: I’ve had a full career; I have a loving wife, a beautiful son, and a certain type of light that shines out from me, given to me by a beautiful woman who had a spark in her eyes and fire in her soul.”

Born and raised in Queens, New York, Carol earned a Master’s in Education from Northeastern University.  She was an authority on vocational rehabilitation and leaves behind a legacy of assisting countless numbers of people with disability and disease to lead better lives. Carol sought to see the best in every individual and was tireless in her battle against injustice to the ill and handicapped. She served the FSH Society as Secretary of the Board and Executive Director, and was also Area Director for the Massachusetts Rehabilitation Commission.  She lived her final days with dignity in her own home surrounded by loved ones.

Those wishing to honor Carol’s memory may make a donation to the FSH Society here.

University of Kansas seeks volunteers for study

EIM device is noninvasive and painless.

EIM device is noninvasive and painless.

FSHD patients are needed for a research study for: The Relationship of Electrical Impedance Myography to Muscle Structure and Function in Facioscapulohumeral Muscular Dystrophy (FSHD). The study is directed by Jeffrey Statland, MD, of the University of Kansas Medical School.

Recent genetic advances in the understanding of FSHD have identified potential future targets for therapy. Consequently, it is important that to have appropriate tools in place for use in FSHD clinical trials. This study will evaluate a new measure of muscle structure, electrical impedance myography (EIM). Continue reading