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Patient Resources

A physiatric approach to FSH muscular dystrophy 

by Susan Keeshin, MD, Shirley Ryan Abilities Lab

Patient Resources

Tips for air travel with a power wheelchair

by Howard Chabner, lawyer, disabilities advocate, and world traveler.

Financials

2012 Annual Donor Report

(We inadvertently omitted Judith and Ken Seslowe. The FSH Society deeply regrets the error.)

Financials

2013 Form 990

Financials

2016 Form 990

Advocacy

#FSHDselfies

Connect Conference

2016 FSHD Patient Connect conference

Slides and Videos

Connect Conference

Multicenter infantile onset FSHD study

2014 FSHD Patient Connect conference presentation by Yi-Wen Chen

Connect Conference

Natural History Studies

2014 FSHD Patient Connect conference presentation by Ray Huml

Connect Conference

Genetically Similar Epigenetically Different

2014 FSHD Patient Connect conference presentation by Peter Jones

Connect Conference

Modeling FSHD in zebrafish

2014 FSHD Patient Connect conference presentation by Louis Kunkel

Connect Conference

Update on PT and Exercise

2014 FSHD Patient Connect conference presentation by Shree Pandya

Connect Conference

FSHD & Nutrition

2014 FSHD Patient Connect conference presentation by Sabrina Sacconi

Connect Conference

Unlocking the Clinical Trial Toolbox

2014 FSHD Patient Connect conference presentation by Jefferey Statland

Connect Conference

Consensus model for FSHD identifies opportunities for therapy

2014 FSHD Patient Connect conference presentation by Stepehn Tapscott

Connect Conference

Progress Towards Clinical Trials

2014 FSHD Patient Connect conference presentation by Kathryn Wagner

Connect Conference

FSHDselfies Campaign

PDF

Connect Conference

FSH Society Fundraising Workshop

PDF

Newsletters

FSH Watch 2017 Issue 1

PDF

Newsletters

FSH Watch 2016 Issue 3

PDF

Newsletters

FSH Watch 2016 Issue 2

PDF

Newsletters

FSH Watch 2016 Issue No. 1

PDF

Newsletters

FSH Watch Newsletter Spring/Summer 2015

28 pages (PDF)

Newsletters

FSH Watch Newsletter Winter 2015

24 pages (PDF)

Newsletters

FSH Watch Newsletter Spring 2014

20 pages (PDF)

Newsletters

FSH Watch Newsletter Winter 2014

28 pages (PDF)

Newsletters

FSH Watch Newsletter Spring 2013

20 pages (PDF)

Newsletters

FSH Watch Newsletter Winter 2013

28 pages (PDF)

Newsletters

FSH Watch Newsletter Summer Fall 2012

20 pages (PDF)

Newsletters

FSH Watch Newsletter Winter 2012

16 pages (PDF)

Newsletters

FSH Watch Newsletter Fall 2011

12 pages (PDF)

Newsletters

FSH Watch Newsletter Spring 2011

12 pages (PDF)

Newsletters

FSH Watch Newsletter Winter 2011

16 pages (PDF)

Newsletters

FSH Watch Newsletter Spring 2010

12 pages (PDF)

Newsletters

FSH Watch Newsletter Winter 2010

12 pages (PDF)

Newsletters

FSH Watch Newsletter Fall 2009

12 pages (PDF)

Newsletters

FSH Watch Newsletter Spring 2009

12 pages (PDF)

Newsletters

FSH Watch Newsletter Winter 2009

12 pages (PDF)

Newsletters

FSH Watch Newsletter Fall 2008

12 pages (PDF)

Newsletters

FSH Watch Newsletter FSHD Wellstone MD CRC

2 pages (PDF)

Newsletters

FSH Watch Newsletter Spring 2008

12 pages (PDF)

Newsletters

FSH Watch Newsletter Winter 2008

16 pages (PDF)

Newsletters

FSH Watch Newsletter Fall 2007

12 pages (PDF)

Newsletters

FSH Watch Newsletter Summer 2007

52 pages (PDF)

Patient Resources

About FSHD

Patient Resources

About the FSH Society

Patient Resources

Physical Therapy for FSHD Brochure

Physical Therapy and FSHD brochure by Shree Pandya, PT, DPT, MS and Kate Eichinger, PhD, PT, DPT, NCS

Patient Resources

Health Tips

Patient Resources

A Guide for Friends and Family

Patient Resources

A Guide for Schools

Patient Resources

Managing FSHD: One Patient’s Perspective

By Howard Chabner

Patient Resources

Resource list for Navigating Intimate Relationships

by Hilary Michaels

Patient Resources

Resource list for finding information and help

by Bill Maclean

Patient Resources

The decision to stop working

by Howard Chabner

Patient Resources

Physical Activity and Exercise in FSHD (2012) by Craig McDonald, MD

By Craig McDonald, MD (2012)

Patient Resources

FSHD and Exercise (2014) by Julie Hershberg, PT

by Julie Hershberg, PT (2014)

Financials

2015 Form 990

Financials

2014 Form 990

Donation Forms

General Donation Form

Donation Forms

Membership Donation Form

Donation Forms

Tribute Gift Form

Patient Resources

Breathing Health in FSHD

Patient Resources

Scapular Fixation Surgery

Patient Resources

Map of the FSHD-linked Genes

Patient Resources

Summary of 2013