Give the Gift of Hope by Donating Tissue for Research in Life and in Death

Wanted in Life and in Death – FSHD Tissue Donation

Please consider the valuable gift to research of tissue and organ donation while living and at death.  Please sign up to be a tissue donor.  Also, please be aware that valuable tissues such as muscle can be obtained from certain types of surgery such as scapular fixation.    

The National Institutes of Health (NIH) National Institute of Child Health and Human Development (NIH NICHD) Brain and Tissue Bank for Developmental Disorders at the University of Maryland in Baltimore is a tissue resource center established by the NIH NICHD to further research aimed at improving the understanding, care and treatment of developmental disorders.

The NICHD Brain and Tissue Bank serves as an intermediary between the research community and people who wish to donate tissue for research at their death. The bank safely stores the tissue until qualified researchers request the tissue for research which has been approved by their Institutional Review Board. Both people with developmental disorders and people free of disorders are encouraged to register and donate tissue. Often it is the comparison of the unaffected with the affected that unlocks the medical mystery of a disorder.

Facioscapulohumeral muscular dystrophy (FSHD) is the second most prevalent adult muscular dystrophy. FSHD affects men, women and children. The availability of tissue from donors with this disorder is especially limited. As more tissue becomes available and more researchers dedicate their life’s work to this disorder, new discoveries can lead to new treatments, and, eventually, to a cure. It is only through the study of donated tissue that important answers will be found.

If you are interested in becoming a registered donor, or if you have any questions or concerns regarding the donation process, please contact Melissa Larkins, Project Coordinator, at (800) 847-1539 during normal business hours (9 a.m.-5 p.m. EST Monday through Friday). Ms. Larkins can be reached any time in an emergency.

Thank you for taking the time to consider tissue donation.

Please visit their website www.btbank.org  or contact:

Anthony Weldon, Project Coordinator
Brain and Tissue Bank for Developmental Disorders
University of Maryland
655 W. Baltimore Street, 13-013 BRB
Baltimore, MD 21201-1559
USA
Toll free: (800) 847-1539; Local: (410) 706-1755
Fax: (410) 706-0020
e-mail: btbumab@umaryland.edu, or aweldon@umaryland.edu

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FSHD Muscle Biopsies Needed for Research Repositories

FSHD researchers are in constant need of muscle biopsies from FSHD patients.  Muscle biopsies play a crucial role in FSHD research.  When considering how many researchers use muscle biopsies, the need is clear.

A muscle biopsy is a surgical procedure in which a small sample of muscle is removed for diagnostic and research purposes. The biopsy procedure is a minor surgery that is usually done as outpatient day surgery under local or general anesthetic. FSHD clinicians and researchers need two types of biopsies, depending on the requirements of their work. One is called a needle biopsy and the other is an open biopsy. A needle biopsy involves inserting a needle into the muscle to a certain depth and capturing the sample of muscle inside the needle. The incision is usually five millimeters deep and a few millimeters in length. An open biopsy requires making an incision or a cut that is a few centimeters in length; a sample of muscle about the size of a pea is removed and stitching is required to close the incision. Both types of biopsies are needed and are in high demand to help researchers and clinicians quicken the pace of their work.

Please consider making a valuable gift to research by contacting the FSH Society to let us know you are willing to donate tissues. Contact Daniel Paul Perez at the Research Office of the Society or e-mail biopsy@fshsociety.org if you are interested in making a contribution to the science that could ultimately find treatments and a cure for FSHD.

The FSH Society and Johns Hopkins School of Medicine is currently recruiting volunteers with FSHD and their family members to provide blood and muscle samples for a clinical research study. Click here for more information.