Category Archives: Newsletter

FSH Watch Issue 3 is out!

We are excited to announce the arrival of our newest edition of the FSH Watch.  This Watch not only shares patient stories and information on coping with FSHD, but also contains updates on the research projects being funded by the FSH Society with your support!  We are happy to FSH Watch Issue 3 2016share all of this going into the holiday season.  This edition of the Watch features…

  • Daniel Perez, President and CEO of the FSH Society, looking back on 25 years of searching for a cure
  • The annual research report on progress understanding the biological mechanisms of FSHD and developing treatments
  • Ask the PT! Physical Therapist Julie Hershberg answers patient questions on all things related to physical therapy
  • Personal stories from Christer Oldenhov, Katie Ruekert, Carden Wyckoff, Susan Mayes discussing topics ranging from adjusting to a scooter to donating muscle to research to the development of Colorado’s first annual Walk & Roll fundraiser!
  • Michelle Dodd explains how NeuroPhysics has helped her twelve-year-old son
  • FSH Society members gather in North Carolina and Washington, DC to hear from doctors and researchers

  Download this edition of the Watch here!

 

The FSH Watch 2016 Issue 2 is out!

Our newest issue of the FSH newsletter is here!  We’re so excited to share new scientific updates, patient stories, and the latest FSH Society initiatives.

Highlights include: fshwatchissue2cover

  • The creation of a Clinical Trial Research Network of universities, designed to speed the search for treatments for FSH (cover story);
  • Patient’s brother competes in American Ninja Warrior on NBC to raise awareness about FSHD (cover story);
  • The establishment of a new registry for FSH patients and family members to donate tissues for scientific research (page 3);
  • More Q&A with Dr. Rabi Tawil, discussing starting a family with FSHD, whether there is still a need for muscle biopsies, and how new guidelines might affect FSHD 2 patients (page 5);
  • A patient who takes on Chase Bank for discrimination in their loans (page 7);
  • A new Boston-area start-up begins testing biotech treatments for FSHD (page 8);
  • Chicago and South Florida patients start new FSH support groups (pages 10 and 12);
  • How to take advantage of the tax-advantaged savings accounts for family members with disabilities (page 15);
  • Interview with author and FSHD patient Belinda Miller (page 13).

Click here to read

 

FSH Watch 2016 Issue 1 is out!

2016FSHWatchIssue1_coverHot off the press, our current issue of FSH Watch keeps you up to date on important advances in research and medical care, as well as news about your Society, regional meetings, and upcoming events. Individuals living with FSHD share their thoughts about “coming out” and their responsibilities as advocates and research participants. Highlights include:

  • Human FSHD muscles cells have been successfully grown in a mouse, providing a possible new animal model (page 1);
  • First-ever World FSHD Day was celebrated on June 20 (page 1);
  • Dr. Rabi Tawil answers patients’ questions about the evidence-based FSHD care guideline published in 2015 (page 3);
  • A patient reflects on the responsibility that comes with volunteering for a clinical study (page 5);
  • NIH funding for FSHD research hits a new record (page 4);
  • EIM: An inexpensive, fast tool for clinical trials? (page 6);
  • Feed you soul. Artists with FSDH get extra creative (page 8);
  • Newly awarded FSH Society grants (page 16);
  • Upcoming patient meetings and events (page 20);
  • Progress in biomarkers for FSHD (page 22).

To read, download FSH Watch 2016 Issue 1.

Hot off the press! FSH Watch Fall 2015 issue

2015-FallWatch_CoverThis October we had our first-ever gala in Los Angeles, an incredibly fun Halloween costume ball aptly named “A Ghostly Gala to Vanish FSHD.” There, June spoke of the importance of raising public awareness, because you first must make something visible before you can make it vanish. That’s just Magic 101. But it’s a serious point. How can we make FSHD more visible? One way is to stir up a cauldron of activity. This issue of FSH Watch overflows with reports of our accomplishments: Continue reading

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).

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.

FSH Watch Summer/Fall 2014 issue is out

FSHWatch-SummerFall2014

Highlights include:

  • Annual research report, with updates from FSH Society grant recipients.
  • Groundbreaking study establishing that FSHD may be the most prevalent of muscular dystrophies.
  • A new NIH-funded Wellstone Center for Muscular Dystrophy in Seattle, Washington.
  • The life-changing impact of the #FSHDSelfies campaign.
  • A genetically engineered mouse with an on-off switch for DUX4.
  • American Society of Gene and Stem Cell Therapy meeting report.
  • New Directions in Biology and Disease of Skeletal Muscle meeting report.

Download and read the entire issue here.

FSH Watch Spring 2014

2014-SpringWatchCoverYou can read and download it by clicking here.

Highlights of this issue include the following:

  • Details about FSHD Connect, our biennial meeting that brings together patients and families with some of the world’s foremost researchers and clinicians for two days of immersive learning and networking.
  • The latest scientific advances including the discovery of two DNA sequences that activate expression of DUX4 protein only in FSHD muscle; factors that increase the risk of respiratory insufficiency in some FSHD patients; the first published high-throughput drug screening study for compounds that block DUX4 toxicity; and a method to grow human FSHD muscle in a mouse.
  • Patients and researchers share their personal stories in Washington DC as they advocate for resources for FSHD.
  • Our Events Calendar for this year. Fundraisers from coast to coast are raising awareness and dollars for FSH Society programs and research grants. Please help spread the word!

FSH Watch Winter 2014

2014WinterWatchCover

Highlights include:

  • Report from the 2013 International Research Consortium meeting in Cambridge, Massachusetts. Advances in basic research, clinical trials and future drug targets.
  • Introducing our new Celebrity Honorary Board. Stars from film, TV, music and sports sign on to help raise awareness.
  • University of Massachusetts Medical School opens new FSHD research center and clinic.
  • Photos and stories from the Celebrity Walk ‘n’ Roll, New York City benefit concert, fundraisers in Atlanta and golf tournaments from Toronto and Abilene.

And much more! Read or download the full 2014 Winter Watch here.

FSH Watch Annual Research Report 2013

FSHWatch-SummerFall2013Our annual review of scientific research funded by the FSH Society has just been published in the Summer/Fall 2013 issue of the FSH Watch newsletter. The issue includes a list of the top papers from the past year with comments about their significance, opportunities for research volunteers, and the latest Society news. The full issue is available here to read and download (pdf).