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Lectures & Seminars at the Senator Paul D. Wellstone MD CRC

To Be Announced.

The NIH BBRI Senator Paul D. Wellstone MD CRC Annual Research Planning Meeting

Annual Wellstone MD CRC Research Brainstorming and Planning Meeting

An annual meeting workshop is held by the Wellstone MD CRC. This meeting is also held as an addendum to the LEC/CAC annual retreat. The last annual meeting of the Wellstone MD CRC researchers and advisors was held June 16-18,2009. The next annual meeting will be held mid 2010

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Annual FSHD International Research Consortium

Annual FSHD International Research Consortium Workshop [FSH Society, Inc.]

Annually since 1992, the FSH Society has held its FSHD International Research Consortium Workshop for researchers and clinicians involved with FSHD. This meeting is one day in length and held as a satellite meeting to the annual American Society of Human Genetics (ASHG) meeting.

The Facioscapulohumeral muscular dystrophy International Consortium Workshop is the only annual platform for clinicians, medical and basic scientist to be informed about the latest developments in FSHD. For many years now, this workshop provides the FSHD community a platform to present and discuss new developments, reinforce collaborative efforts and facilitate new collaborative initiatives. The FSHD International Research consortium convenes annually at a satellite conference to the American Society of Human Genetics (ASHG) to pursue three goals:

1. to discuss the genetic and biological mechanisms and patho-physiological causes of FSHD,
2. to improve diagnostic techniques and criteria for FSHD, and,
3. to consider and evaluate new and existing therapies for the disorder.

The workshop has an open admission with usually 60-70 attendees including clinicians, scientists and representatives of funding organizations. The 2009 workshop will be co-chaired by Dr. Silvere van der Maarel, Ph.D. (Leiden University, Netherlands), Dr. Kathryn Wagner, M.D., Ph.D. (Kennedy Krieger Institute & Johns Hopkins Hospital, Baltimore, Maryland) and Dan Perez (President & CEO) of the FSH Society. The workshop includes platform and poster presentations. Attendees are requested to submit abstracts in advance. Abstracts are scored on priority and allocated to platform or poster presentations. An abstract booklet will become available at the meeting and is sent to the attendees a week in advance.

The Wellstone MD CRCwill co-sponsor this annual meeting.

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Biennial FSHD International Patient Researcher Network Meeting

Every other year the FSH Society, Inc. holds its Biennial FSHD International Patient and Researcher Network meeting.

The FSH Society, Inc. and the Wellstone MD CRC are collaborating on the eighth international patient researcher network meeting to be held in Las Vegas, Nevada in 2010. The intent of these meetings is to bring together patients, researchers, clinicians and funding agencies to find insights and facilitate breakthroughs through dialogue. The program goal is to educate patients, researchers, clinicians, funding agencies and industry to help solve FSHD.

The 2010 International Patient and Researcher Network Meeting will be held at the Paris and Bally’s Hotels in Las Vegas, Nevada, July 30-August 1, 2010. These hotels have been selected for their accessibility, their convenient location, and good value. They are a part of the same complex and share meeting space.

To view the preliminary program, registration materials please visit the FSH Society, Inc. page for The Biennial FSH Society International Patient and Researcher Network Day. You may register for the meeting by postal mail or fax using the registration form, or register online. See: http://www.fshsociety.org/pages/comMeeting.html

The 2008 patient network conference was held on July 26-28, 2008. The FSHD International Patient and Researcher Network Day was held at the Coralville Marriott Hotel & Meeting Center, Coralville, Iowa. Monday, July 28, 2008 was set aside for a special clinic day with Dr. Katherine Mathews and staff to see patients with the very severe childhood form of FSHD called infantile FSHD.

The 2008 International Network and Contact Day for Facioscapulohumeral Muscular Dystrophy (FSHD) was held Sunday, July 27th in Coralville/Iowa City, Iowa. This international patient, researcher, clinician networking day had four components:

• "Health Information You Need to Know" — clinical-focused lectures. Covering the clinical picture of physical therapy and respiratory therapy issues in FSHD;
• "Helping to Solve FSHD" - molecular biology and genetics focused lectures. Covering new insights in FSHD research, therapies, compounds and strategies; and FSHD research and genetic testing advances;
• Moderated panel discussions;
• Concurrent workshops for patients and doctors: "Taking Care of Ourselves;" "Caregivers Respite for Significant Others and Parents;" "Q&A with Researchers and Clinicians -- A session to meet and collaborate with research professionals;" "Self-Advocacy and Patient Advocacy." Two workshops focusing on the special needs of teenagers and young adults have been added.

The Wellstone MD CRCwill co-sponsor this annual meeting.

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