| Image | Titlename | Download | Description | File Type | Library Categories | hf:tax:library_category |
|---|---|---|---|---|---|---|
| FSHD Advocate 2023 Issue 3 | This issue of FSHD Advocate features Better Life FSHD. Additional articles about: a holistic approach to community and care (J. Kinoshita); Project Mercury updates (K. Kahtava); broader views on treatment options (N. Voermanns); the FSHD Patient Navigator (A. Gilmore); the 2023 Walk & Roll to Cure FSHD (B. Johnston & E. Saxon); clinical care vs. clinical research (A. Hill); engineering new muscles (F. Thys); children and youth with FSHD (A. Roets); and the FACT Alliance (J. Arjomand). | Link | FSHD Advocate, Newsletters | advocate newsletters | ||
 | FSHD Advocate 2023 Issue 2 | This issue of FSHD Advocate features Project Mercury. Additional articles about: 2023 International Research Congress; World FSHD Alliance annual summit; Industry consortium workshop; patient access to treatments (Josie Godfrey); stem cell therapeis from Rita Perlingeiro lab; TrueCost of FSHD study; Red Scooter Diaries documentary; essay by Nina Wise; ad for Walk & Roll to Cure FSHD; Lolo Spencer podcast; Chip Wilson podcast; Sam and Kate “We Exist Too” video; fitness with Mitch Wade. | Link | FSHD Advocate, Newsletters | advocate newsletters | |
 | FSHD Advocate 2023 Issue 1 | Link | FSHD Advocate, Newsletters | advocate newsletters | ||
| Understanding and Navigating Medicare | Excellent guide from Global Genes for people with long-term disability on how to navigate Medicare coverage. | Educational resources, Guides to Living with FSHD | educational-resources guides-to-living-with-fshd brochures-and-more | |||
 | Physical therapy for shoulder dyskinesia in FSHD | Slides from 2022 FSHD Connect plenary talk by Jos IJspeert. | Brochures and More, Connect Conference, Educational resources, Health care toolkit, Research | brochures-and-more connect-conference educational-resources health-care-toolkit research | ||
 | FSHD Advocate 2022 Issue 3 | Link | FSHD Advocate, Newsletters | advocate newsletters | ||
 | FSHD Advocate 2022 Issue 2 | Link | FSHD Advocate, Newsletters | advocate newsletters | ||
 | FSHD Advocate 2022 Issue 1 | Link | FSHD Advocate, Newsletters | advocate newsletters | ||
 | FSHD Advocate 2021 Issue 3 | Link | FSHD Advocate, Newsletters | advocate newsletters | ||
 | FSHD Advocate 2021 Issue 2 | LINK | FSHD Advocate, Newsletters | advocate newsletters | ||
 | Notes of spinal and scapular surgery | Brochures and More, Health care toolkit | brochures-and-more health-care-toolkit | |||
 | FSHD Advocate 2021 Issue 1 | FSHD Advocate, Newsletters | advocate newsletters | |||
 | FSHD Advocate 2020 Issue 3 | LINK | FSHD Advocate, Newsletters | advocate newsletters | ||
 | Voice of the Patient Report | Advocacy, Research | advocacy research | |||
 | Industry Collaborative for Therapy Development in FSHD | Research | research | |||
 | 100 Questions & Answers About Muscular Dystrophy (First Edition, 2020) | by Kathryn R. Wagner, MD, PhD | Link | Books by & for patients, Brochures and More, Educational resources | books-by-for-patients brochures-and-more educational-resources | |
 | FSHD Advocate 2020 Issue 2 | Link | FSHD Advocate, Newsletters | advocate newsletters | ||
 | FSHD Advocate 2020 Issue 1 | Link | FSHD Advocate, Newsletters | advocate newsletters | ||
 | FSHD Advocate 2019 Issue 3 | Link | FSHD Advocate, Newsletters | advocate newsletters | ||
 | FSHD Society 2012 Atlanta Meeting | Welcome to our Videos page. You can select which video you wish to play by clicking the menu list icon in the top-left corner of the video player. Our complete video library is available on the FSHD Society YouTube channel. | Link | YouTube | YouTube Videos | youtube-videos brochures-and-more | |
| FSHD Connect 2014 | Welcome to our Videos page. You can select which video you wish to play by clicking the menu list icon in the top-left corner of the video player. Our complete video library is available on the FSHD Society YouTube channel. | Link | YouTube | YouTube Videos | youtube-videos brochures-and-more | |
| FSHD Connect 2016 | Welcome to our Videos page. You can select which video you wish to play by clicking the menu list icon in the top-left corner of the video player. Our complete video library is available on the FSHD Society YouTube channel. | Link | YouTube | YouTube Videos | youtube-videos brochures-and-more | |
| FSHD Connect 2018 | Welcome to our Videos page. You can select which video you wish to play by clicking the menu list icon in the top-left corner of the video player. Our complete video library is available on the FSHD Society YouTube channel. | Link | YouTube | YouTube Videos | youtube-videos brochures-and-more | |
| FSHD Society Public Service Announcements | Welcome to our Videos page. You can select which video you wish to play by clicking the menu list icon in the top-left corner of the video player. Our complete video library is available on the FSHD Society YouTube channel. | Link | YouTube | YouTube Videos | youtube-videos brochures-and-more | |
| FSHD Society Events | Welcome to our Videos page. You can select which video you wish to play by clicking the menu list icon in the top-left corner of the video player. Our complete video library is available on the FSHD Society YouTube channel. | Link | YouTube | YouTube Videos | youtube-videos brochures-and-more | |
| FSHD Society Living with FSHD | Welcome to our Videos page. You can select which video you wish to play by clicking the menu list icon in the top-left corner of the video player. Our complete video library is available on the FSHD Society YouTube channel. | Link | YouTube | YouTube Videos | youtube-videos brochures-and-more | |
| FSHD Society Medical Seminars | Welcome to our Videos page. You can select which video you wish to play by clicking the menu list icon in the top-left corner of the video player. Our complete video library is available on the FSHD Society YouTube channel. | Link | YouTube | YouTube Videos | youtube-videos brochures-and-more | |
| FSHD Society Research Seminars | Welcome to our Videos page. You can select which video you wish to play by clicking the menu list icon in the top-left corner of the video player. Our complete video library is available on the FSHD Society YouTube channel. | Link | YouTube | YouTube Videos | youtube-videos brochures-and-more | |
 | The Resource Finder at Kennedy Krieger Institute | Please contact us to recommend more web resources. | Link | Brochures and More, Websites | brochures-and-more websites | |
 | FSH Society Radio Show Live-15 with guests Beth Johnston and Leigh Reynolds | Podcast | Audio | mp3 | FSH Society Radio Podcasts | fsh-society-radio-podcasts | ||
| FSH Society Radio Show Live - 16 guest Kristin Duquette | Podcast | Audio | mp3 | FSH Society Radio Podcasts | fsh-society-radio-podcasts | ||
| FSH Society Radio Show Live-17 guest Taylor Quigg | Podcast | Audio | mp3 | FSH Society Radio Podcasts | fsh-society-radio-podcasts | ||
| FSH Society Radio Show live-18 guest Skylar Conover | Podcast | Audio | mp3 | FSH Society Radio Podcasts | fsh-society-radio-podcasts | ||
| FSH Society Radio Show live-19 guest Amanda Rickard | Podcast | Audio | mp3 | FSH Society Radio Podcasts | fsh-society-radio-podcasts | ||
| FSH Society Radio Show Live-20 Guest June Kinoshita | Podcast | Audio | mp3 | FSH Society Radio Podcasts | fsh-society-radio-podcasts | ||
| FSH Society webinar with Dr Rabi Tawil | Link | Brochures and More, YouTube Videos | brochures-and-more youtube-videos | ||
| Facial surgery methods for Facioscapulohumeral Muscular Dystrophy | Link | Brochures and More, YouTube Videos | brochures-and-more youtube-videos | ||
| Dr. Anthony Romeo describes scapularthoracic fusion surgery for FSHD | Link | Brochures and More, YouTube Videos | brochures-and-more youtube-videos | ||
| FSH Society – Introduction to yoga for people with FSHD | Link | Brochures and More, YouTube Videos | brochures-and-more youtube-videos | ||
| FSH Society Michigan Meeting | Waking up your muscles | Link | Brochures and More, YouTube Videos | brochures-and-more youtube-videos | |
| Muscle Activation Exercises with Lynnette Rasmussen FSH Society | Link | Brochures and More, YouTube Videos | brochures-and-more youtube-videos | ||
| Our YouTube channel has dozens of educational videos | Link | Brochures and More, YouTube Videos | brochures-and-more youtube-videos | ||
 | Dealing with Physical Decline from Muscular Dystrophy, by Don Nemke | by Don Nemke | Brochures and More, Guides to Living with FSHD | brochures-and-more guides-to-living-with-fshd | ||
 | A Guide for Schools | Brochures and More, Guides to Living with FSHD | brochures-and-more guides-to-living-with-fshd | |||
 | FSHD and Social Support: A Guide for Friends and Family | Brochures and More, Guides to Living with FSHD | brochures-and-more guides-to-living-with-fshd | |||
 | You Are Not Alone. A Guide for the Newly Diagnosed | Brochures and More, Guides to Living with FSHD | brochures-and-more guides-to-living-with-fshd | |||
 | 171st ENMC International Workshop- Standards of care and management of FSHD | Brochures and More, Useful professional publications | brochures-and-more useful-professional-publications | |||
 | Evidence-based FSHD care guideline AAN tools and materials | Link | Brochures and More, Useful professional publications | brochures-and-more useful-professional-publications | ||
 | Evidence-based FSHD care guideline – Summary for patients & families | Link | Brochures and More, Useful professional publications | brochures-and-more useful-professional-publications | ||
 | Evidence-based FSHD care guideline – Summary for clinicians | Useful professional publications to share with your doctor | Link | Brochures and More, Useful professional publications | brochures-and-more useful-professional-publications | |
 | Medical Equipment: Access Solutions and Respiratory Therapy by Howard Chabner | Brochures and More, Health care toolkit | brochures-and-more health-care-toolkit | |||
 | Early-onset (infantile) FSHD Fact Sheet | Brochures and More, Health care toolkit | brochures-and-more health-care-toolkit | |||
 | FSHD Fact Sheet | Brochures and More, Health care toolkit | brochures-and-more health-care-toolkit | |||
 | An Overview of Anesthetic Concerns by Raymond Huml | Brochures and More, Health care toolkit | brochures-and-more health-care-toolkit | |||
 | Guidelines for Physical Therapists Treating Clients with Neuromuscular Disorders | Brochures and More, Health care toolkit | brochures-and-more health-care-toolkit | |||
 | Letter Requesting Insurance Coverage for Genetic Testing (Word Doc Templates) | DOC | DOCX | Brochures and More, Health care toolkit | brochures-and-more health-care-toolkit | ||
 | Evidence-based FSHD Care Guideline + Online Resources | Brochures and More, Health care toolkit | brochures-and-more health-care-toolkit | |||
 | Resources for FSHD patients & families | Brochures and More, Health care toolkit | brochures-and-more health-care-toolkit | |||
 | Physical Therapy for FSHD brochure (in Chinese) | Brochures and More, Health care toolkit | brochures-and-more health-care-toolkit | |||
 | FSH Society Medical Alert card | Brochures and More, Health care toolkit | brochures-and-more health-care-toolkit | |||
 | About FSHD (in Spanish; in Chinese) | About FSHD (in Spanish; in Chinese) | Brochures and More, Health care toolkit | brochures-and-more health-care-toolkit | ||
 | FSH Watch: Vol. 6, No. 1, Fall 1999 | Newsletters | newsletters | |||
 | FSH Watch: Vol. 7, No. 1, Spring 2001 | Newsletters | newsletters | |||
 | FSH Watch: Vol. 8, No. 1, Winter 2003 | Newsletters | newsletters | |||
 | FSH Watch: Vol. 8, No. 2, Spring 2003 | Newsletters | newsletters | |||
 | FSH Watch Newsletter Summer 2005: Vol 10, No. 1. | 48 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter Summer 2007 | 52 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter Fall 2007 | 12 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter Winter 2008 | 16 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter Spring 2008 | 12 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter Summer 2008 Research Issue | 24 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter FSHD Wellstone MD CRC | 2 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter Fall 2008 | 12 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter Winter 2009 | 12 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter Spring 2009 | 12 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter Summer 2009 Research Issue | 28 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter Fall 2009 | 12 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter Winter 2010 | 12 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter Spring 2010 | 12 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter Summer Fall Research 2010 | 24 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter Winter 2011 | 16 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter Spring 2011 | 12 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter Summer 2011 Research Issue | 28 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter Fall 2011 | 12 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter Winter 2012 | 16 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter Summer Fall 2012 | 20 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter Winter 2013 | 28 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter Spring 2013 | 20 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter Summer Fall 2013 Annual Research Issue | 32 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter Winter 2014 | 28 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter Spring 2014 | 20 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter Summer Fall 2014 Annual Research Issue | 24 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter Winter 2015 | 24 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter Spring/Summer 2015 | 28 pages (PDF) | Newsletters | newsletters | ||
 | FSH Watch Newsletter Fall 2015 | Newsletters | newsletters | |||
 | FSH Watch 2016 Issue 1 | Newsletters | newsletters | |||
 | FSH Watch 2016 Issue 2 | Newsletters | newsletters | |||
 | FSH Watch 2016 Issue 3 | Newsletters | newsletters | |||
 | FSH Watch 2017 Issue 1 | Newsletters | newsletters | |||
 | FSH Watch 2017 Issue 2 | Newsletters | newsletters | |||
 | FSH Watch 2017 Issue 3 | Newsletters | newsletters | |||
 | FSH Watch 2018 Issue 1 | Newsletters | newsletters | |||
 | FSH Watch 2018 – Issue 2 | Newsletters | newsletters | |||
 | Consent Form for Participation in a Neuromuscular Research Study | Research | research | |||
 | Muscle Surgery and Blood Samples from Patients with FSHD | Research | research | |||
 | May 2012: A Long ncRNA Links Copy Number Variation to a Polycomb/Trithorax Epigenetic Switch in FSHD Muscular Dystrophy | LINK | Research | research | ||
 | July 2012: FSHD Family Studies of DUX4 Expression | Research | research | |||
 | Sept 2014: FSH Society helps researchers develop an inducible DUX4 mouse model | LINK | Research | research | ||
 | Orphanet Report Series: Prevalence of Rare Diseases | Research | research | |||
 | 2012 FSH Society patient conference, Atlanta | Videos | LINK | Connect Conference | connect-conference | |
 | FSH Society Fundraising Workshop | Connect Conference | connect-conference | |||
 | FSHDselfies Campaign | Connect Conference | connect-conference | |||
 | Progress Towards Clinical Trials | 2014 FSHD Patient Connect conference presentation by Kathryn Wagner | Connect Conference | connect-conference | ||
 | Consensus model for FSHD identifies opportunities for therapy | 2014 FSHD Patient Connect conference presentation by Stepehn Tapscott | Connect Conference | connect-conference | ||
 | Unlocking the Clinical Trial Toolbox | 2014 FSHD Patient Connect conference presentation by Jefferey Statland | Connect Conference | connect-conference | ||
 | FSHD & Nutrition | 2014 FSHD Patient Connect conference presentation by Sabrina Sacconi | Connect Conference | connect-conference | ||
 | Update on PT and Exercise | 2014 FSHD Patient Connect conference presentation by Shree Pandya | Connect Conference | connect-conference | ||
 | Modeling FSHD in zebrafish | 2014 FSHD Patient Connect conference presentation by Louis Kunkel | Connect Conference | connect-conference | ||
 | Genetically Similar Epigenetically Different | 2014 FSHD Patient Connect conference presentation by Peter Jones | Connect Conference | connect-conference | ||
 | Natural History Studies | 2014 FSHD Patient Connect conference presentation by Ray Huml | Connect Conference | connect-conference | ||
 | Multicenter infantile onset FSHD study | 2014 FSHD Patient Connect conference presentation by Yi-Wen Chen | Connect Conference | connect-conference | ||
 | #FSHDselfies | Advocacy | advocacy | |||
 | FSH Society FY2017 Written Testimony before the US House Appropriations Committee on NIH Research, April 16, 2016 | Advocacy | advocacy | |||
 | FSH Society FY2017 Written Testimony before the US Senate Appropriations Committee on NIH Research, April 16, 2016 | Advocacy | advocacy | |||
 | April 2015 Testimony Submitted to the US House Appropriations Committee | Advocacy | advocacy | |||
 | March 2015 Testimony Submitted to U.S. Senate Appropriations Subcommittee | Advocacy | advocacy | |||
 | May 2014 Testimony Submitted to U.S. Senate Appropriations Subcommittee | Advocacy | advocacy | |||
 | March 2014 Testimony Submitted to U.S. House Appropriations Subcommittee | Advocacy | advocacy | |||
 | May 2013 Testimony Submitted to U.S. Senate Appropriations Subcommittee | Advocacy | advocacy | |||
 | March 2013 Testimony Submitted to U.S. House Appropriations Committee | Advocacy | advocacy | |||
 | April 2012 Testimony Submitted to US Senate Appropriations Subcommittee | Advocacy | advocacy | |||
 | March 2012 Testimony Submitted to US Senate Appropriations Subcommittee | Advocacy | advocacy | |||
 | April 2011 Testimony Submitted to US Senate Appropriates Subcommittee | Advocacy | advocacy | |||
 | April 2010 Testimony Submitted to US Senate Appropriations Subcommittee | Advocacy | advocacy | |||
 | April 2010 Testimony Submitted to US House of Representatives Appropriations Subcommittee | Advocacy | advocacy | |||
 | May 2009 Testimony Submitted to US Senate Appropriations Subcommittee | Advocacy | advocacy | |||
 | April 2008 Testimony Submitted to US Senate Appropriations Subcommittee | Advocacy | advocacy | |||
 | March 2008 Testimony Submitted to US House of Representatives Appropriations Subcommittee | Advocacy | advocacy | |||
 | March 2007 Testimony Submitted to Subcommittee on Labor, Health and Human Services | Advocacy | advocacy | |||
 | March 2007 Testimony Submitted to US House of Representatives Appropriations Subcommittee | Advocacy | advocacy | |||
 | March 2007 Testimony Submitted to US Senate Appropriations Subcommittee | Advocacy | advocacy | |||
 | Honoring the Memory of Stephen Jacobsen, Karen Johnsen and William Michael | Educational resources | educational-resources | |||
 | Summary of 2013 | Educational resources | educational-resources | |||
 | Map of the FSHD-linked Genes | Educational resources | educational-resources | |||
 | Scapular Fixation Surgery | Educational resources | educational-resources | |||
 | Breathing Health in FSHD | Educational resources | educational-resources | |||
 | FSHD and Exercise (2014) by Julie Hershberg, PT | by Julie Hershberg, PT (2014) | Educational resources | educational-resources | ||
 | Physical Activity and Exercise in FSHD (2012) by Craig McDonald, MD | By Craig McDonald, MD (2012) | Educational resources | educational-resources | ||
 | Best Practice Guidelines on Genetic Diagnostics of FSHD | Educational resources | educational-resources | |||
 | The decision to stop working | by Howard Chabner | Brochures and More, Educational resources, Guides to Living with FSHD | brochures-and-more educational-resources guides-to-living-with-fshd | ||
 | Resource list for finding information and help | by Bill Maclean | Educational resources | educational-resources | ||
 | Resource list for Navigating Intimate Relationships | by Hilary Michaels | Brochures and More, Educational resources, Guides to Living with FSHD | brochures-and-more educational-resources guides-to-living-with-fshd | ||
 | Managing FSHD: One Patient’s Perspective | By Howard Chabner | Brochures and More, Educational resources, Guides to Living with FSHD | brochures-and-more educational-resources guides-to-living-with-fshd | ||
| 171st ENMC International Workshop- Standards of care and management of FSHD | Educational resources | educational-resources | |||
| Evidence-based FSHD care guideline – Summary for patients & families. | Educational resources | educational-resources | |||
| Evidence-based FSHD care guideline – Summary for clinicians. | Educational resources | educational-resources | |||
| A Guide for Schools | Educational resources | educational-resources | |||
| A Guide for Friends and Family | Educational resources | educational-resources | |||
 | Health Tips | Brochures and More, Educational resources, Health care toolkit | brochures-and-more educational-resources health-care-toolkit | |||
 | Physical Therapy for FSHD Brochure | Physical Therapy and FSHD brochure by Shree Pandya, PT, DPT, MS and Kate Eichinger, PhD, PT, DPT, NCS | Educational resources | educational-resources | ||
| Fact Sheet on FSHD / infantile-onset FSHD | Educational resources | educational-resources | |||
 | About the FSH Society | Educational resources | educational-resources | |||
 | About FSHD | Educational resources | educational-resources | |||
 | Tips for air travel with a power wheelchair | by Howard Chabner, lawyer, disabilities advocate, and world traveler. | Brochures and More, Educational resources, Guides to Living with FSHD | brochures-and-more educational-resources guides-to-living-with-fshd | ||
 | A physiatric approach to FSH muscular dystrophy | by Susan Keeshin, MD, Shirley Ryan Abilities Lab | Educational resources | educational-resources | ||
 | FSHD Advocate 2019 Issue 2 | Link | FSHD Advocate, Newsletters | advocate newsletters | ||
 | FSHD Advocate 2019 Issue 1 | Link | FSHD Advocate, Newsletters | advocate newsletters | ||
 | FSHD Advocate 2018 Issue 3 | Link | FSHD Advocate, Newsletters | advocate newsletters |
Lighting the Way to a Cure