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February 2021

Tue 23
Featured Featured Feb 23, 2021 @ 8:00 pm - 9:00 pm Recurring

Sharegiver Hour

8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules... Read More »

March 2021

Thu 18
FSHD University Logo
Featured Featured Mar 18, 2021 @ 1:00 pm - 2:00 pm

FSHD University: Managing difficult emotions and experiences

1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT In this month’s FSHD University webinar, psychologist David Younger will teach you about one of his favorite mindfulness practices. It will help to demystify the concept of mindfulness so you can put it into action in your daily life in a... Read More »

Tue 30
Featured Featured Mar 30, 2021 @ 8:00 pm - 9:00 pm

Caregiver / Sharegiver Hour

8:00 - 9:00 PM ET This monthly meeting is for those of you who are providing care to loved ones with FSHD. To spark discussion, we're recommending this short article in Time magazine: How to Help a Caregiver Without Saying Stay Positive. Don't worry if you don't have time to read it. Join us anyway!... Read More »

April 2021

Mon 12
Gathering at FSHD Connect
Featured Featured Apr 12, 2021 @ 5:00 pm - 6:00 pm

Wellness Hour (Virtual Meeting)

This is our monthly Zoom meeting on Wellness, held on the second Monday of each month at 5:00-6:00 pm ET (if Monday is a national holiday, the meeting will be held on Tuesday). It is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers, share challenges,... Read More »

Tue 13
FSHD Society Radio -small
Featured Featured Apr 13, 2021 @ 8:00 pm - 9:00 pm

FSHD Radio – Haviva Ner-David, author of Hope Valley

You Tube

9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT LISTEN HERE Note: our original program featuring the FSHD Society's Jamshid Arjomand, PhD, chief science officer, has been postponed until later this year. Instead, we are delighted to welcome Rabbi Haviva Ner-David, a long-time member of the FSHD Society whose... Read More »

Thu 15
FSHD University Logo
Featured Featured Apr 15, 2021 @ 1:00 pm - 2:00 pm

FSHD University: A researcher’s journey into FSHD

1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Learning, discovering and testing: a researcher’s journey into FSHD Angela Lek, PhD, will share her scientific journey as an FSHD researcher. Her work is focused on understanding the molecular circuits Dr. Angela Lek that are perturbed in response to DUX4... Read More »

Tue 27
Featured Featured Apr 27, 2021 @ 8:00 pm - 9:00 pm Recurring

Sharegiver Hour

8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules... Read More »

May 2021

Mon 10
Gathering at FSHD Connect
Featured Featured May 10, 2021 @ 5:00 pm - 6:00 pm Recurring

Wellness Hour (Virtual Meeting)

This is our monthly Zoom meeting on Wellness, held on the second Monday of each month at 5:00-6:00 pm ET (if Monday is a national holiday, the meeting will be held on Tuesday). The Wellness Hour is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers,... Read More »

Tue 11
FSHD Society Radio -small
Featured Featured May 11, 2021 @ 8:00 pm - 9:00 pm

FSHD Society Radio with Lori Brant, personal coach

You Tube

9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Lori Brant Join host Tim Hollenback on YouTube on the 2nd Tuesday of every month. Call Tim at 414-375-2561 to share your thoughts, or post questions and comments in the YouTube comments section. You can also watch the recording on Facebook... Read More »

Thu 20
FSHD University Logo
Featured Featured May 20, 2021 @ 1:00 pm - 2:00 pm

FSHD University: The Job Talk

1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Many individuals diagnosed with FSHD feel that they are unemployable or they should just give up and file for disability benefits.  Lynn Stevens will talk about employment fallacies, assistive devices that can help you remain employed, career change strategies and... Read More »

Tue 25
Featured Featured May 25, 2021 @ 8:00 pm - 9:00 pm Recurring

Sharegiver Hour

8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules... Read More »

June 2021

Tue 8
FSHD Society Radio -small
Featured Featured Jun 8, 2021 @ 8:00 pm - 9:00 pm

FSHD Society Radio – Jam Sesh with Jamshid

You Tube

9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Our guest this month is our very own Jamshid Arjomand, PhD, chief science officer. He'll update you about the latest research and drug development advances (that he's allowed to talk about). If you have questions about FSHD research, now's your... Read More »

Mon 14
Gathering at FSHD Connect
Featured Featured Jun 14, 2021 @ 5:00 pm - 6:00 pm

Wellness Hour (Virtual Meeting) – Transitions

This is our monthly Zoom meeting on Wellness, held on the second Monday of each month at 5:00-6:00 pm ET (if Monday is a national holiday, the meeting will be held on Tuesday). This month we will talk about transitions, which are an inevitable fact of life for anyone living with a progressive condition like... Read More »

Mon 14
Gathering at FSHD Connect
Featured Featured Jun 14, 2021 @ 5:00 pm - 6:00 pm Recurring

Wellness Hour (Virtual Meeting)

This is our monthly Zoom meeting on Wellness, held on the second Monday of each month at 5:00-6:00 pm ET (if Monday is a national holiday, the meeting will be held on Tuesday). The Wellness Hour is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers,... Read More »

Thu 17
FSHD University Logo
Featured Featured Jun 17, 2021 @ 1:00 pm - 2:00 pm

FSHD University: Clinical trials 101

1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT With Tahseen Mozaffar, MD, chair of neurology at the University of California Irvine. Learn about clinical trials, the scientific process by which researchers determine whether a new therapy is safe, works biologically as expected, and, most importantly, can improve outcomes... Read More »

Thu 24
FSHD University Logo
Featured Featured Jun 24, 2021 @ 4:00 pm

FSHD University – Fulcrum Phase 2b Trial Results

4:00 PM ET | 3:00 PM CT | 2:00 PM MT | 1:00 PM PT The team from Fulcrum Therapeutics will be sharing the data from its Phase 2b clinical trial of Losmapimod, a treatment for FSH muscular dystrophy that is intended to stop the expression of the DUX4 gene and slow the progression of... Read More »

Tue 29
Featured Featured Jun 29, 2021 @ 8:00 pm - 9:00 pm

Sharegiver Hour

8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT We'll be discussing the recent Fulcrum clinical trial results with the FSHD Society's June Kinoshita, director of research and patient engagement. What do these results mean, and how are you and your loved ones with FSHD processing the information? This monthly... Read More »

July 2021

Mon 12
Gathering at FSHD Connect
Featured Featured Jul 12, 2021 @ 5:00 pm - 6:00 pm

Wellness Hour (Virtual Meeting)

This month, we'll be discussing the recent Fulcrum clinical trial results with the FSHD Society's June Kinoshita, director of research and patient engagement. For many of us, this news is top of mind, so we want to provide the space to discuss the study and share how we are feeling and processing the information. Our... Read More »

Tue 13
FSHD Society Radio -small
Featured Featured Jul 13, 2021 @ 8:00 pm - 9:00 pm

FSHD Society Radio – GenZ of FSHD

You Tube

9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT This month's radio show guest is Heloise Hoffmann, who is not only the director of our Southwest Florida chapter and author of a new research paper on sleep and FSHD, but she is also a member of the team of... Read More »

Thu 15
FSHD University Logo
Featured Featured Jul 15, 2021 @ 1:00 pm - 2:00 pm

FSHD University: Dynamic Sitting

1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT We’ve all heard how important a well-tailored exercise program is for people with FSH muscular dystrophy. This is easier said than done, especially if you have difficulty standing up or worry about falling during exercise. In today’s webinar, Dr. Nikia... Read More »

Tue 27
Featured Featured Jul 27, 2021 @ 8:00 pm - 9:00 pm

Sharegiver Hour – The mental health toll of the pandemic

8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. This month, we have... Read More »

August 2021

Mon 9
Featured Featured Aug 9, 2021 @ 5:00 pm - 6:00 pm Recurring

Wellness Hour (Virtual Meeting)

5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us for our monthly Zoom meeting on Wellness, held on the second Monday of each month at 5:00-6:00 pm ET (if Monday is a national holiday, the meeting will be held on Tuesday). Each month, we'll have a conversation... Read More »

Sat 14
Team Captain Rally header
Featured Featured Aug 14, 2021 @ 12:00 pm - 1:00 pm

Walk & Roll Team Captain Rally

Zoom Virtual Meeting

Team Captain Rally  |  Saturday, August 14th 12:00pm - 1:00pm ET/11:00 - 12:00pm CT/10:00am - 11:00am MT/9:00am - 10:00am PT We're bringing together team captains from across the US and Canada, via Zoom, so that we can celebrate and honor our team captains. We know that captains put in a lot of extra time and effort to... Read More »

Thu 19
FSHD University Logo
Featured Featured Aug 19, 2021 @ 1:00 pm - 2:00 pm

FSHD University-Sleep, Pain, and FSHD: Uncovering the missing link

1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT In this presentation, Heloise Hoffmann will share her work focusing on understanding the relationship between FSHD, sleep, and pain. Sleep is essential, but it could be affected by FSHD. To confirm this link, Heloise conducted a survey of FSHD Society... Read More »

Tue 31
Featured Featured Aug 31, 2021 @ 8:00 pm - 9:00 pm

Sharegiver Hour – Responding to the Fulcrum study

8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. This month, June Kinoshita,... Read More »

September 2021

Tue 7
Featured Featured Sep 7, 2021 @ 8:00 pm - 9:00 pm

FSHD Society Radio – Max Adler on Walk & Roll 2021

You Tube

9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Note: we have changed the date to September 7 for this month only. Tonight's featured guest is our National Walk & Roll Ambassador, actor Max Adler, who will be talking about his FSHD advocacy and this year's Walk & Roll.... Read More »

Mon 13
Featured Featured Sep 13, 2021 @ 5:00 pm - 6:00 pm

Wellness Hour (Virtual Meeting) – Fatigue!

Join us this month for a conversation on a subject that most people with FSHD are all too familiar with--fatigue. When does it hit you? How do you cope when it happens? How do you avoid it? And how does fatigue and the frustration and sadness of not having the energy to do your work... Read More »

Thu 23
FSHD University - Calendar Feature
Featured Featured Sep 23, 2021 @ 1:00 pm - 2:00 pm

FSHD University: The Mattering Effect: How Feeling Valued and Adding Value Shape our Lives

1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Presented by Isaac and Ora Prilleltensky. Mattering consists of feeling valued and adding value, to ourselves and others. By feeling valued we mean being appreciated, respected, and recognized. By adding value we mean making a contribution and making a difference... Read More »

Tue 28
Featured Featured Sep 28, 2021 @ 8:00 pm - 9:00 pm

Sharegiver Hour

8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules... Read More »

October 2021

Wed 6
Featured Featured Oct 6, 2021 @ 5:00 pm - 6:00 pm Recurring

Women on Wellness – Transitions in mobility

Zoom Virtual Meeting

First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our topic this month is transitions in mobility. How do we know it’s time for an assistive device , or to switch from walker/cane to a motorized scooter or power chair? Also knowing it doesn’t... Read More »

Sat 9
GenZ Calendar Feature
Featured Featured Oct 9, 2021 @ 5:00 pm - 7:00 pm

GenZ of FSHD meet-up and launch party

5:00 pm US ET | 4:00 pm US CT | 3:00 pm US MT | 2:00 pm US PT Use the World Clock time converter to figure out your local time Follow GenZ of FSHD on Instagram After launching “GenZ of FSHD,” a social media-based group for teens and young adults in the FSHD community,... Read More »

Mon 11
Featured Featured Oct 11, 2021 @ 5:00 pm - 6:00 pm

Wellness Hour (Virtual Meeting)

5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, FSHD Society member Donna Russo will start things off with a 15-minute chair yoga session. This will be a great way to get your body activated and start a conversation about self-care. Our monthly Zoom meeting on Wellness... Read More »

Tue 12
FSHD Society Radio Show
Featured Featured Oct 12, 2021 @ 8:00 pm - 9:00 pm

FSHD Society Radio on our Early-Onset chapter

You Tube

Tuesday, October 12 Ally Roets & her son Sam. 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT This month's guests are Ally Roets and her son, Sam Ray. Together with Kristin Zwickau, they are co-leading our early-onset FSHD chapter for families that have members who developed symptoms of... Read More »

Thu 21
FSHD University - Calendar Feature
Featured Featured Oct 21, 2021 @ 1:00 pm - 2:00 pm

FSHD University: Pregnancy and reproductive genetic counseling

1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT With Sanne Vincenten, MD, and Nicol Voermans, MD PhD, of Radboud University Medical Center, and Jacinda Sampson, MD PhD, of Stanford University Medical Center. Drs. Vincenten and Voermans recently co-wrote an article on FSHD genetics and reproductive counseling, together with... Read More »

Tue 26
Featured Featured Oct 26, 2021 @ 8:00 pm - 9:00 pm Recurring

Sharegiver Hour

8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules... Read More »

November 2021

Mon 8
Featured Featured Nov 8, 2021 @ 5:00 pm - 6:00 pm

Wellness Hour (Virtual Meeting) – Eating for health

5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Matt Beke, University of Florida Food is essential to our health and is also laden with a lot of emotional freight, both good and bad (especially as we head into holiday season!). This month, we've invited Matt Beke, a clinical... Read More »

Tue 9
FSHD Society Radio Show
Featured Featured Nov 9, 2021 @ 8:00 pm - 9:00 pm

FSHD Society Radio Jammin’ with Jamshid

You Tube

Tuesday, November 9 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT This month's guests is our chief science officer, Jamshid Arjomand, PhD! He'll be sharing the latest and greatest in FSHD research, including news from the Clinical Trial Research Network investigators meeting that just happened last week in... Read More »

Thu 18
FSHD University Logo
Featured Featured Nov 18, 2021 @ 12:00 pm - 1:00 pm

FSHD University: Drug Development update

12:00 PM ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Jeffrey Statland, MD Our speaker this month is Jeffrey Statland, MD, co-director of the FSHD Clinical Trial Research Network and professor of neurology at the University of Kansas Medical Center. Dr. Statland has his finger on the pulse of all... Read More »

Tue 30
Featured Featured Nov 30, 2021 @ 8:00 am - 9:00 pm

FSHD Radio – Giving Tuesday Radiothon

Facebook Live

Tim Hollenback, FSHD Radio host #GivingTuesday is a global generosity movement unleashing the power of people and organizations to transform their communities and the world. On Tuesday, November 30th, we will celebrate with an all-day Radiothon event with FSHD Radio. Our amazing host, Tim Hollenback, will hold four hour-long sessions live on Facebook. Tune in... Read More »

Tue 30
Featured Featured Nov 30, 2021 @ 8:00 pm - 9:00 pm

Sharegiver Hour – Eating for health

8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Matt Beke, University of Florida We’ve invited Matt Beke, a clinical dietician at the Fixel Center for Neurological Diseases at the University of Florida, to join us this evening to talk about food, health, and self-care. Matt is a Registered Dietitian... Read More »

December 2021

Mon 13
Featured Featured Dec 13, 2021 @ 5:00 pm - 6:00 pm

Wellness Hour (Virtual Meeting) – Reducing stress in our lives

5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us this month to learn about stress reduction through Mindfulness. Dr. Jennifer Egert will lead us through a brief introduction and exercise in Mindfulness. Then we'll break up into smaller conversation groups so everyone will have a chance to... Read More »

Tue 14
Featured Featured Dec 14, 2021 @ 8:00 pm - 9:00 pm

FSHD Radio with Guest, Sam Ray

Facebook and YouTube

Tuesday, December 14 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT This month’s guests will be Sam Ray, a 15-year-old, in Tucson, AZ, who is living with Early-onset FSHD. Sam will talk with Tim about how his FSHD motivated him to explore exoskeleton technology, and fostered his love... Read More »

Thu 16
FSHD University Logo
Featured Featured Dec 16, 2021 @ 1:00 pm - 2:00 pm

FSHD University: Orthotics for knee hyperextension

1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Bob Meier, CO Bob Meier, certified orthotist, is back to present on a topic that is not uncommon in people with FSHD: knee hyperextension. During walking, certain muscles are activated so that the human knee never even reaches full or... Read More »

Tue 28
Featured Featured Dec 28, 2021 @ 8:00 pm - 9:00 pm

Sharegiver Hour

8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT As we close out the year, we'll gather to share companionship and conversation. What has the past year been like for you? How are you handling the holidays? What are you doing to take care of yourself? How can this group... Read More »

January 2022

Wed 5
Featured Featured Jan 5 @ 5:00 pm - 6:00 pm

Women on Wellness – Breast cancer and mastectomy

First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This is our mutual support and social group for women of all ages who are living with FSHD. The topic this month was suggested by a woman with FSHD who was planning to have a... Read More »

Mon 10
Featured Featured Jan 10 @ 5:00 pm - 6:00 pm

Wellness Hour (Virtual Meeting) – Mobility devices

5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us this month to learn about what to think about when choosing a power scooter or wheelchair. We'll be joined by Ray Jordan, Cyndi Segroves, and Amy Bekier, all highly experienced in this topic. They've done their homework and... Read More »

Tue 11
Featured Featured Jan 11 @ 8:00 pm - 9:00 pm

FSHD Radio: Community Profiles with Steve Way

Facebook and YouTube

Tuesday, January 11th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving... Read More »

Tue 18
Featured Featured Jan 18 @ 7:00 pm - 8:00 pm

Early-Onset Parent Roundtable

Virtual TX

Tuesday, January 18th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as... Read More »

Tue 25
Featured Featured Jan 25 @ 8:00 pm - 9:00 pm

Sharegiver Hour – Mindfulness meditation

8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Jennifer Egert, PhD Join psychologist and mindfulness instructor Jennifer Egert, PhD, to learn about mindfulness meditation and how to apply it in your daily life to improve your mental state. This monthly meeting is for those of you who are providing... Read More »

Thu 27
FSHD University Logo
Featured Featured Jan 27 @ 1:00 pm - 2:00 pm

FSHD Univeristy – Physical therapy for shoulder dyskinesia

1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Presented by Jos IJspeert, MSc, Radboud University Medical Center Jos IJspeert, Radboud University Medical Center Shoulder or scapular dyskinesia is one of the most common symptoms of FSHD. The muscles that normally stabilize the shoulder blade, or scapula, are weakened, and... Read More »

Thu 27
Featured Featured Jan 27 @ 8:00 pm - 9:00 pm

FSHD Radio: Hot off the Press with Jamshid Arjomand, PhD

Facebook and YouTube

Thursday, January 27th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society,... Read More »

February 2022

Wed 2
Featured Featured Feb 2 @ 5:00 pm - 6:00 pm

Women on Wellness – Help with activities of daily living

First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT At our meeting this month, we'll converse about navigating our challenges with activities of daily living. Share your tips and tricks, and how you find and ask for help when you need it. Women on... Read More »

Tue 8
Featured Featured Feb 8 @ 8:00 pm - 9:00 pm

FSHD Radio: Community Profiles with Rick Whitehead

Facebook and YouTube

Tuesday, February 8th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving... Read More »

Mon 14
Featured Featured Feb 14 @ 5:00 pm - 6:00 pm

Wellness Hour – Internalized Ableism

5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we thought we'd explore the topic of ableism--and in particular ableist concepts that all of us absorb unconsciously because ableism is so deeply embedded in our culture and language that many of us are unaware of them. Internalized... Read More »

Tue 15
Featured Featured Feb 15 @ 7:00 pm - 8:00 pm

Early-Onset Parent Roundtable

Virtual Denver

Tuesday, February 15th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as... Read More »

Thu 17
FSHD University Logo
Featured Featured Feb 17 @ 1:00 pm - 2:00 pm

FSHD University – Solve FSHD, treatment accelerator

1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Eva Chin, PhD With Eva Chin, PhD. Eva is Executive Director of Solve FSHD, a recently formed Canadian company that is focused on accelerating the development of treatments for FSHD. Eva is a Canadian-trained scientist who has had an international career... Read More »

Tue 22
Featured Featured Feb 22 @ 8:00 pm - 9:00 pm Recurring

CarePartner Hour: Helping with self-care

Zoom Virtual Meeting

8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Calling all care partners to join us this month for a conversation about helping your loved one with self-care. This can be delicate ground as your partner wants to preserve as much independence as possible while adapting to losses in physical... Read More »

Thu 24
Featured Featured Feb 24 @ 8:00 pm - 9:00 pm

FSHD Radio: Hot off the Press with Beth Johnston

Facebook and YouTube

Thursday, February 24th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society,... Read More »

Mon 28
Featured Featured Feb 28 @ 8:00 am - 11:59 pm

Rare Disease Day

Virtual Denver

Thank you for helping us spread awareness about FSH muscular dystrophy on Rare Disease Day! Rare Disease Day occurs every year on the last day of February. On February 28th, we hope you will share your story on your social media platforms and that the resources here help you do so. Thank you for helping us all raise... Read More »

March 2022

Wed 2
Featured Featured Mar 2 @ 5:00 pm - 6:00 pm

Women on Wellness

First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT The March meeting of the Women on Wellness (WOW) will be a continuation of the full and robust topic of Activities of Daily Living (ADLs), including personal care needs. We will continue our conversation from... Read More »

Tue 8
Featured Featured Mar 8 @ 8:00 pm - 9:00 pm

FSHD Radio: Community Profiles

Facebook and YouTube

Tuesday, March 8th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving... Read More »

Mon 14
Featured Featured Mar 14 @ 5:00 pm - 6:00 pm

Wellness Hour – Designing for accessibility

Zoom Virtual Meeting

5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, Jane Earl will take us on a virtual tour of her home to show us how she has designed it for maximum accessibility as her FSHD has progressed. Her experiences have turned her into an advocate for universal... Read More »

Tue 15
Featured Featured Mar 15 @ 7:00 pm - 8:00 pm

Early-Onset Parent Roundtable

Virtual Denver

Tuesday, March 15th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as... Read More »

Sun 20
Featured Featured Mar 20 @ 10:00 am - 3:00 pm

Bay Area FSHD 360

Center for Academic Medicine 453 Quarry Road, Palo Alto, CA

10:00 am - 3:00 pm Pacific Time  Registration now open! Our Bay Area chapter and Stanford University are co-hosting this year's Bay Area FSHD 360 conference. Stanford joined the FSHD Clinical Trial Research Network in 2020, but it has had an FSHD research center for many years prior under John Day, MD PhD, a leader... Read More »

Sun 20
GenZ Calendar Feature
Featured Featured Mar 20 @ 3:00 pm - 4:00 pm

GenZ of FSHD

Zoom Virtual Meeting

3:00 PM ET 2:00 PM CT | 1:00 PM MT | 12:00 PM PT Get to know your fellow GenZers on March 20th at this fun gathering! We’ll play online social games and chat in a laid-back, supportive environment. We hope to see you there! Held every other month on the third Sunday at 3:00... Read More »

Wed 23
FSHD University Logo
Featured Featured Mar 23 @ 1:00 pm - 2:00 pm

FSHD University: Fulcrum’s Phase 3 clinical trial

Zoom Web Conference

1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Please join FSHD Society and Fulcrum Therapeutics in a community webinar announcing REACH, the 1st Phase 3 clinical trial in FSHD. REACH will enroll ~230 patients at clinical sites in US, Canada and Europe beginning this spring. Information regarding trial design and activation... Read More »

Thu 24
Featured Featured Mar 24 @ 8:00 pm - 9:00 pm

FSHD Radio: Hot off the Press with Anna Gilmore

Facebook and YouTube

Thursday, March 24th  9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society,... Read More »

Tue 29
Featured Featured Mar 29 @ 8:00 pm - 9:00 pm Recurring

CarePartner Hour: Helping with self-care

Zoom Virtual Meeting

8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Calling all care partners to join us this month for a conversation about helping your loved one with self-care. This can be delicate ground as your partner wants to preserve as much independence as possible while adapting to losses in physical... Read More »

April 2022

Wed 6
Featured Featured Apr 6 @ 5:00 pm - 6:00 pm

Women on Wellness – Body Image

Zoom Virtual Meeting

First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month's topic is "Body Image, Promoting Positivity within a Potentially Challenging Topic." How we individually perceive our own Body Image, as we experience the changes imposed upon us by the FSHD disease process. Acknowledging... Read More »

Mon 11
Featured Featured Apr 11 @ 5:00 pm - 6:00 pm

Wellness Hour – On breathing

Zoom Virtual Meeting

5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we'll be discussing breathing issues, which affect many in our community. We'll be joined by Dan Wilson RRT, CPFT, AE-C, a respiratory therapist with the Indiana Joint Asthma Coalition (InJAC). Dan has FSHD himself. Also joining us is... Read More »

Tue 12
Featured Featured Apr 12 @ 8:00 pm - 9:00 pm

FSHD Radio: Community Profiles with Christel Rohrs

Facebook and YouTube

Tuesday, April 12th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving... Read More »

Tue 19
Featured Featured Apr 19 @ 7:00 pm - 8:00 pm

Early-Onset Parent Roundtable

Virtual Denver

Tuesday, April 19th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as... Read More »

Thu 21
FSHD University Logo
Featured Featured Apr 21 @ 1:00 pm - 2:00 pm

FSHD University Webinar – Managing pain in individuals with FSHD

Zoom Virtual Meeting

1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Kathy Mathews, Shelley Mockler, and Krista Kohl. Around 70-80 percent of individuals diagnosed with facioscapulohumeral muscular dystrophy report that pain is a significant part of their condition. There has been relatively little research or discussion in the medical literature about the... Read More »

Tue 26
Featured Featured Apr 26 @ 8:00 pm - 9:00 pm

Sharegiver Hour – What do you miss most?

Zoom Virtual Meeting

8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Join us this month to share stories about activities you and your loved ones with FSHD once enjoyed but find increasingly difficult - or impossible - to continue. It's okay to mourn. How do we overcome such losses? Have you discovered... Read More »

Thu 28
Featured Featured Apr 28 @ 8:00 pm - 9:00 pm

FSHD Radio: Hot off the Press with David Younger

Facebook and YouTube

Thursday, April 28th  9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society,... Read More »

May 2022

Wed 4
Featured Featured May 4 @ 5:00 pm - 6:00 pm

Women on Wellness

Zoom Virtual Meeting

First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Warmer weather will soon be here!! Many in the WOW group have talked excitedly of travel plans. With travel comes a couple of high-level concerns for those of us with neuromuscular diseases. The challenges of... Read More »

Thu 5
FSHD University Logo
Featured Featured May 5 @ 1:00 pm - 2:00 pm

FSHD University – Our genetic testing program

Zoom Web Conference

1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Access to genetic testing for FSHD has long been a problem in our field. Many doctors find it challenging to order the test because it is complicated and offered by only a few laboratories. Patients and families face obstacles in finding... Read More »

Mon 9
Featured Featured May 9 @ 5:00 pm - 6:00 pm

Wellness Hour – The Benefits of Self-Compassion

Zoom Virtual Meeting

5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Self-compassion is simply about treating ourselves in difficult times with the same kindness and compassion that we would treat a good friend who is struggling. We already know how to do this when it comes to other people. However, making... Read More »

Tue 10
Featured Featured May 10 @ 8:00 pm - 9:00 pm

FSHD Radio: Community Profiles with Michaela Walker

Facebook and YouTube

Tuesday, May 10th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving... Read More »

Sun 15
GenZ Calendar Feature
Featured Featured May 15 @ 3:00 pm - 4:00 pm

GenZ of FSHD

Zoom Virtual Meeting

3:00 PM ET 2:00 PM CT | 1:00 PM MT | 12:00 PM PT Get to know your fellow GenZers at this social gathering! This month, Russ Caratenuto, currently a medical student, will talk about his path into medicine, including some of his own research, and then explain some of the up and coming drug... Read More »

Tue 17
Featured Featured May 17 @ 7:00 pm - 8:00 pm

Early-Onset Parent Roundtable

Virtual Denver

Tuesday, May 17th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as... Read More »

Thu 19
FSHD University Logo
Featured Featured May 19 @ 1:00 pm - 2:00 pm

FSHD University – The MOVE and MOVE-Plus Studies

Join Drs. Johanna Hamel, Kate Eichinger, and Natalie Katz to learn about the largest natural history ever done for FSH muscular dystrophy. People of all ages can participate, and children and teenagers are especially needed. Find out why this study is so important and why you and your affected family members' involvement will have a... Read More »

Thu 26
Featured Featured May 26 @ 8:00 pm - 9:00 pm

FSHD Radio: Hot Off the Press with June Kinoshita

Facebook and YouTube

Thursday, May 26th  9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society,... Read More »

Tue 31
Featured Featured May 31 @ 8:00 pm - 9:00 pm Recurring

CarePartner Hour: Helping with self-care

Zoom Virtual Meeting

8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Calling all care partners to join us this month for a conversation about helping your loved one with self-care. This can be delicate ground as your partner wants to preserve as much independence as possible while adapting to losses in physical... Read More »

June 2022

Wed 1
Featured Featured Jun 1 @ 5:00 pm - 6:00 pm

Women on Wellness

Zoom Virtual Meeting

First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, one of our members, a wheelchair user, will share of her adventures and challenges during a month-long solo trip driving her van from the Upper Mid-west to Florida. This is our mutual support... Read More »

Mon 13
Featured Featured Jun 13 @ 5:00 pm - 6:00 pm Recurring

Wellness Hour – Ask me anything

Zoom Virtual Meeting

5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, June Kinoshita, director of research and patient education for the FSHD Society, will answer your burning questions about FSHD...or try to. If she doesn't know, she will be mingling with the world experts later this week at the... Read More »

Sat 18
Featured Featured Jun 18 @ 9:00 am - 10:00 am

Early-Onset Parent Roundtable

Virtual Denver

Saturday, June 18 - Special FSHD Connect edition 9:00 AM ET | 8:00 AM CT | 7:00 AM MT | 6:00 AM PT This month we are meeting live with the Early-Onset Families Unite! breakout session at the FSHD Connect conference in Orlando. Join us via Zoom with us as we discuss strategies for activating... Read More »

Tue 28
Featured Featured Jun 28 @ 8:00 pm - 9:00 pm

CarePartner Hour: We need a vacation!

Zoom Virtual Meeting

8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT How can you enjoy a real vacation when you're caught up with concerns about caring for your loved one. It takes a huge amount of planning and anticipating contingencies to travel at all. How do you regain that sense of freedom... Read More »

July 2022

Wed 6
Featured Featured Jul 6 @ 5:00 pm - 6:00 pm Recurring

Women on Wellness – Transitions in mobility

Zoom Virtual Meeting

First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our topic this month is transitions in mobility. How do we know it’s time for an assistive device , or to switch from walker/cane to a motorized scooter or power chair? Also knowing it doesn’t... Read More »

Mon 11
Featured Featured Jul 11 @ 5:00 pm - 6:00 pm

Wellness Hour – How do I talk to my family about FSHD?

Zoom Virtual Meeting

5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT FSHD is a familial condition, and yet family members can hold different attitudes about how open to be about their diagnosis and how much they are willing to discuss it amongst themselves. Have you wanted to discuss genetic testing or... Read More »

Thu 14
FSHD University Logo
Featured Featured Jul 14 @ 1:00 pm - 2:00 pm

FSHD University – True Cost of FSHD

Zoom Web Conference

1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT The FSHD Society is conducting a new survey-based study called “The True Cost of FSHD” and is putting out a call to the FSHD community to participate. This is one of the most important and urgent surveys we have ever done.... Read More »

Tue 19
Featured Featured Jul 19 @ 7:00 pm - 8:00 pm

Early-Onset Parent Roundtable

Virtual Denver

Tuesday, July 19th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as... Read More »

Thu 21
Featured Featured Jul 21 @ 7:00 pm - 8:00 pm

2022 Walk & Roll Team Captain Happy Hour

Virtual Denver

Team Captain Happy Hour! Thursday, July 21st 4pm PT | 5pm MT | 6pm CT | 7pm ET Ending FSHD will take all of us and that’s why the Walk & Roll to Cure FSHD is so important. It’s why team captains matter so much. When you team up with friends, family, and co-workers to... Read More »

Tue 26
Featured Featured Jul 26 @ 8:00 pm - 9:00 pm

CarePartner Hour: Helping with self-care

Zoom Virtual Meeting

8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Calling all care partners to join us this month for a conversation about helping your loved one with self-care. This can be delicate ground as your partner wants to preserve as much independence as possible while adapting to losses in physical... Read More »

Thu 28
Featured Featured Jul 28 @ 8:00 pm - 9:00 pm

FSHD Radio: Hot off the Press

Facebook and YouTube

Thursday, July 28th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society,... Read More »

August 2022

Wed 3
Featured Featured Aug 3 @ 5:00 pm - 6:00 pm

Women on Wellness – Transitioning to assistive devices

Zoom Virtual Meeting

First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we continue our discussions about transitioning to assistive devices, looking closer at how insurance impacts this need and looking at building community within our group. This is our mutual support and social group... Read More »

Sun 7
GenZ Calendar Feature
Featured Featured Aug 7 @ 3:00 pm - 4:00 pm

GenZ of FSHD – Fundraising is empowering

Zoom Virtual Meeting

3:00 PM ET 2:00 PM CT | 1:00 PM MT | 12:00 PM PT This month, we'll be talking about fundraising! Maybe this sounds intimidating, but learning how to get your story out there and build a team of friends, family, and other supporters to raise donations is incredibly empowering. Get to know your fellow... Read More »

Mon 8
Featured Featured Aug 8 @ 5:00 pm - 6:00 pm

Wellness Hour: Getting to know us

Zoom Virtual Meeting

5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we'd like to have some fun and give our growing group a chance to get to connect with one another on a deeper level. We'll start by asking everyone to use the Chat window to share three things... Read More »

Tue 9
Featured Featured Aug 9 @ 8:00 pm - 9:00 pm

FSHD Radio: Community Profiles – Claire Szabo Cassella

Facebook, YouTube, and anywhere you listen to podcasts

Tuesday, August 9th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving... Read More »

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