From our CEO, a call to FSHD researchers

Daniel Perez, FSH Society CEO
Daniel Perez, FSH Society CEO

Dear Research Colleagues,

The late Senator Paul Wellstone of Minnesota

As you know, the FSH Society constantly encourages the National Institutes of Health (NIH) to increase the number of grants and the number of dollars it funds on one of the most common forms of muscular dystrophy–facioscapulohumeral muscular dystrophy (FSHD)–while urging the FSHD research community to help the NIH to achieve higher levels of spending on FSHD by submitting grant applications. In fiscal year 2017, the NIH estimates funding $80 million on all forms of muscular dystrophy (source: NIH online Research, Condition, and Disease Categorization (RCDC) system).

Many of you are familiar with the NIH Paul D. Wellstone Muscular Dystrophy Cooperative Research Centers (U54) program to enhance and intensify research on the muscular dystrophies. They were established in 2003, as part of the MD-CARE Act (Public Law 107-84 of 2001 and 110-361 of 2008) and were named in honor of the late Senator Paul D. Wellstone. You may not know that the Society worked with Senator Wellstone, one of the three Senators who initially proposed the bill, to expand its scope to include all adult muscular dystrophies including FSHD. To date, the NIH has maintained six active centers since the program was established (funding several per funding cycle).

One of the major objectives of the FSH Society is to increase global funding on FSHD from private, NGO, non-profit, and governmental agencies by enabling preliminary data and research efforts on FSHD and communicating funding opportunities for FSHD. The U.S. NIH will achieve higher levels of spending on FSHD if it receives more grant applications on the disease. Despite the backdrop of a tough funding environment we feel that the quality of science and therapeutic opportunities in FSHD are exceptionally strong and are as well rapidly expanding.

We’ve received a few inquiries on Wellstone renewal efforts.  Again, you may or may not know that last month the NIH issued a notice informing the public of its intent to issue a Funding Opportunity Announcement (FOA) to solicit new or renewal applications for Wellstone Centers under the P50 designation: “Notice of Intent to Publish a Funding Opportunity Announcement for Senator Paul D. Wellstone Muscular Dystrophy Specialized Research Centers Research Centers (P50)” (Notice Number: NOT-AR-18-006).

Key Dates

  • Release Date:  April 13, 2017
  • Estimated Publication Date of Announcement:  May 2017
  • First Estimated Application Due Date:  October 2017
  • Earliest Estimated Award Date:  July 2018
  • Earliest Estimated Start Date:   July 2018

“The NIH expects to make up to three Center awards in response to this upcoming FOA, contingent upon the scientific merit of the applications and availability of funds.  The NIH established the Centers of Excellence program in 2003 as part of an ongoing effort to enhance and intensify research on the muscular dystrophies. These Centers were described in the MD-CARE Act and subsequent reauthorizations in 2008 and 2014, and were named in honor of the late Senator Paul D. Wellstone. The theme of each Center must focus on one or more of the muscular dystrophies, which include Duchenne, Becker, myotonic, facioscapulohumeral, limb-girdle, congenital, oculopharyngeal, Emery-Dreifuss, and others.  The FOA is expected to be published in Spring 2017 with an expected application due date in Fall 2017.  This FOA will utilize the P50 activity code instead of the U54, which was used for prior awards. The scope, funding level, and programmatic requirements of the Centers will not change and NIH Program Officers will continue to promote communication and coordination across the network of Centers.”

We at the FSH Society are very hopeful that developments of the past two or three years will present new opportunities to expand work on FSHD through a P50 mechanism. The FSH Society encourages the FSHD community to consider this opportunity to achieve a higher level of federal funding on FSHD research.

The FSH Society would be very pleased to support and be involved with initiatives aimed at understanding, solving and treating FSHD. Please contact us if we can help or if we may be useful as part of your center application or the effort. We encourage researchers, clinicians and scientists to contact the NIH scientific contacts listed in the Notice to discuss funding opportunities for your ongoing FSHD research and studies.

Scientific/Research Contact(s). Please direct all inquiries to:

Tom Cheever, Ph.D.
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Telephone: 301-594-5019

Glen Nuckolls, Ph.D.
National Institute of Neurological Disorders and Stroke (NINDS)
Telephone: 301-496-5876

Danuta Krotoski, Ph.D.
Eunice Kennedy Shriver National Institute for Child Health and Human Development (NICHD)
Telephone: 301-495-5576

Jonathan R. Kaltman, M.D.
National Heart, Lung, and Blood Institute (NHLBI)
Telephone: 301-435-0510

On behalf of FSH Society and FSHD patients worldwide thank you for your continued efforts and kind consideration of this request.


Daniel Paul Perez
President, CEO & CSO
FSH Society


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