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September 7, 2024:

The Dion Foundation is funding the first-ever clinical trial for LGMD 2C

The Dion Foundation and Atamyo Therapeutics Announce a Partnership to Expand into the US Atamyoโ€™s Clinical Trial of ATA-200 Gene Therapy to Treat Limb-Girdle Muscular Dystrophy Type 2C/R5

โ€œWe are thrilled by this key partnership and grateful to the Dion Foundation for their financial support which aims to include US patients in the first-in-human trial for ATA-200,โ€ said Stรฉphane Degove, CEO of Atamyo. โ€œWe are already engaged in the preparation of an IND filing in the US for ATA-200.โ€

Atamyo is a spin-off of Genethon, a non-profit research organization that is a pioneer in developing gene therapies for rare diseases. ATA-200 is based on the research of Atamyo Chief Scientific Officer Isabelle Richard, Ph.D., Research Director at National Center of Scientific Research (CNRS) in France and head of the Progressive Muscular Dystrophies Laboratory at Genethon.

Genethon CEO Frederic Revah observed, โ€œThis partnership between the Dion Foundation and Atamyo, a spin-off from Genethon, represents another major milestone in our efforts over the past 30 years to develop gene therapies for rare diseases and bring them to patients worldwide.โ€

Read full press release hereโ€ฆ

From the moment we learned of Peter and Maggieโ€™s diagnoses of LGMD 2C/R5 we have been working tirelessly towards this day. โ€œWe are so grateful for the opportunity to establish a partnership with Atamyo to help facilitate bringing their groundbreaking research to a clinical site in the US for the very first clinical trial for children with LGMD2C/R5. This is a monumental step for the entire LGMD community,โ€ said Courtney Dion, Co-Founder and President of the Dion Foundation.

We couldnโ€™t be here today without you!

Your support has given us the opportunity to finance the US expansion of Atamyoโ€™s first-ever clinical trial for LGMD 2C/R5! Now, more than ever, we need your continued support: donate, share, spread the newsโ€ฆ every small step counts towards this momentous leap for LGMD!

WHO WE ARE

PETER & MAGGIE WERE BOTH BORN WITH 10 PERFECT FINGERS AND 10 PERFECT TOES. THEY WERE BOTH DISCHARGED HOME FROM THE HOSPITAL WITH A CLEAN BILL OF HEALTH AND HIT ALL THEIR DEVELOPMENT MILESTONESโ€ฆ

NINE YEARS LATER, EVERYTHING CHANGED WHEN PETER & MAGGIE WERE BE DIAGNOSED WITH A RARE FORM OF MUSCULAR DYSTROPHY LIMB-GIRDLE MUSCULAR DYSTROPHY TYPE 2C (SARCOGLYCANOPATHY)

A RAPIDLY PROGRESSIVE MUSCLE WASTING DISEASE, CAUSED BY GENETIC MUTATIONS. WITH NO CURE.

THUS, THE DION FOUNDATION WAS ESTABLISHED. TO RAISE AWARENESS, FUND RESEARCH AND FIND A TREATMENT FOR THIS FATAL DISEASE.

rare without a cure.

what is sarcoglycanopathy?

LIMB GIRDLE MUSCULAR DYSTROPHY TYPES 2C, 2D, 2E, 2F

AGGRESSIVE FORM OF CHILDHOOD MUSCULAR DYSTROPHY

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"Hope is not pretending that troubles don't exist. It is the trust that they will not last forever, that hurts will be healed and difficulties overcome. It is faith that a source of strength and renewal lies within to lead us through the dark in
"Hope is not pretending that troubles don't exist. It is the trust that they will not last forever, that hurts will be healed and difficulties overcome. It is faith that a source of strength and renewal lies within to lead us through the dark into the sunshine." It’s a gloomy day here in New England - We hope everyone can find some type of light today even if that means getting ice cream with the kids!โ˜€๏ธ๐Ÿ’™ #hope ๐Ÿ™๐Ÿป #timeismuscle #thedionfoundation #mda #neuromusculardisease #neuromuscular #LGMD #musculardystrophy #nochildleftbehind #lgmd2c #genetherapy #cureraredisease #ultrararedisease #rarediseaseawareness #genetic
SAVE THE DATE FOR OUR HUSTLE FOR THE MUSCLE 5K! Our first ever road race will be held on Sunday, October 1st in Waltham, MA. The race will end at the Mighty Squirrel Brewery - registration opens in July! This event will be for anyone: runners, walkers and families. Bring your family, bring your friends! #timeismuscle #thedionfoundation #mda #neuromusculardisease #neuromuscular #LGMD #musculardystrophy #nochildleftbehind #lgmd2c #genetherapy #cureraredisease #ultrararedisease #rarediseaseawareness #genetic
Right now, Maggie is able to go to dance school, keep up with her brothers and friends and accomplish any task she sets her mind to. But unfortunately, everyday that passes her muscles waste away a little bit. Although we are terrified of the future for her, Peter and all children with Muscular Dystrophy, we remain hopeful that through our steadfast efforts here at #thedionfoundation a treatment will be in our hands sooner than later. Everyday, we fight for treatment for girls like Maggie and we will never give up. Thank you for supporting us. Our mission, your help. ๐Ÿ’™ No child left behind #timeismuscle #thedionfoundation #mda #neuromusculardisease #neuromuscular #LGMD #musculardystrophy #nochildleftbehind #lgmd2c #genetherapy #cureraredisease #ultrararedisease #rarediseaseawareness #genetic
VOICE OF THE PATIENT ๐Ÿ“ข Now posted: the collaborative report of patients’ and caregivers’ perspectives of living with LGMD our hope for a potential treatment! ๐Ÿ“ข #lgmdpfdd ๐Ÿ’ฌThe information in the Voice of the Patient report may be used
VOICE OF THE PATIENT ๐Ÿ“ข Now posted: the collaborative report of patients’ and caregivers’ perspectives of living with LGMD our hope for a potential treatment! ๐Ÿ“ข #lgmdpfdd ๐Ÿ’ฌThe information in the Voice of the Patient report may be used to guide therapeutic development and inform the U.S. Food and Drug Administration (FDA) benefit-risk evaluations when assessing therapies to address specific LGMD subtypes. ๐Ÿ™๐Ÿป The hope is that including the perspectives from individuals living with LGMD will enable patient-informed development and review of LGMD therapies to meet the needs and expectations of our patient community. ๐Ÿ“„ The LGMD Coalition has provided this report to the FDA, government agencies, regulatory authorities, medical products developers, academics, and clinicians, and it is publicly available for the many stakeholders in the LGMD community. ๐Ÿ’ป Available at lgmdpfdd.com #timeismuscle #thedionfoundation #mda #neuromusculardisease #neuromuscular #LGMD #musculardystrophy #nochildleftbehind #lgmd2c #genetherapy #cureraredisease #ultrararedisease #rarediseaseawareness #genetic
Kids with Peter & Maggie’s type of Muscular Dystrophy only have a short window of time before the disease will completely interrupt their daily lives. There will be a time when play time isn’t the same, when recess is no longer fun, a
Kids with Peter & Maggie’s type of Muscular Dystrophy only have a short window of time before the disease will completely interrupt their daily lives. There will be a time when play time isn’t the same, when recess is no longer fun, and when simply riding a scooter won’t be a possibility. In a muscle wasting disease #timeismuscle and it is our goal to keep Peter, Maggie and all children suffering from these diseases playing as long as possible. ๐Ÿ’™ Our mission, your help. No child left behind #thedionfoundation #mda #neuromusculardisease #neuromuscular #LGMD #musculardystrophy #nochildleftbehind #lgmd2c #genetherapy #cureraredisease #ultrararedisease #rarediseaseawareness #genetic
We would like to take a quick moment to say thank you to everyone who made our first golf tournament launch such a success. 36 foursomes sold out in less than 24 hours!! Bring on October 23rd ๐Ÿ’™โ›ณ๏ธThank you thank you thank you! Now we are in pursuit
We would like to take a quick moment to say thank you to everyone who made our first golf tournament launch such a success. 36 foursomes sold out in less than 24 hours!! Bring on October 23rd ๐Ÿ’™โ›ณ๏ธThank you thank you thank you! Now we are in pursuit of sponsors! We have a list of multiple sponsorship options and would appreciate any and all sponsors. If you or a business you know would like to sponsor at any level, please reach out! Please contact Maggie at maggie@thedionfund.org if you are interested. Can’t sponsor bit interested in helping further? Share this with your community! Sponsors are what make an even so successful. Our mission. Your help. Thank you for your continued support #dionstrong #thedionfoundation #mda #limbgirdlemusculardystrophy #musculardystrophy #nochildleftbehind #lgmd #lgmd2c #genetherapy #cureraredisease #ultrararedisease #rarediseaseawareness #pediatric #sarcossuck #lgmdr5 @lgmdawareness
1ST ANNUAL GOLF TOURNAMENT REGISTRATION IS NOW LIVE! The Dion Foundation is so excited to announce our first annual Golf Classic! This day will be dedicated to raising funds for research and spreading awareness for Limb Girdle Muscular Dystrophy. We
1ST ANNUAL GOLF TOURNAMENT REGISTRATION IS NOW LIVE! The Dion Foundation is so excited to announce our first annual Golf Classic! This day will be dedicated to raising funds for research and spreading awareness for Limb Girdle Muscular Dystrophy. We are thrilled to host this first annual event at the Marshfield Country Club located in Marshfield, Massachusetts on Monday, October 23rd 2023 @ 11am. Join us for an exciting day of golfing and camaraderie, followed by an awards and dinner reception with raffles and great prizes. Your support will help us make a difference in the lives of those affected by this rare childhood disease. Help us make a difference in the lives of those affected by Limb Girdle Muscular Dystrophy - Get your foursome together and register today before its sold out! You can easily sign up your foursome with a secure payment option for credit cards. LINK TO REGISTER IS IN STORIES & ON OUR WEBSITE UNDER EVENTS #dionstrong #thedionfoundation #mda #limbgirdlemusculardystrophy #musculardystrophy #nochildleftbehind #lgmd #lgmd2c #genetherapy #cureraredisease #ultrararedisease #rarediseaseawareness #pediatric #sarcossuck #lgmdr5 @lgmdawareness
In honor of National Nurses’ Week - this month we would like to spotlight two of our resident nurses and Foundation team members! ๐Ÿ‘ฉ๐Ÿผ‍โš•๏ธ #NursesWeek #nursesday MEET: Maggie Ryan, RN BSN and Medical Liason Courtney Dion, LGMD Mom, RN,
In honor of National Nurses’ Week - this month we would like to spotlight two of our resident nurses and Foundation team members! ๐Ÿ‘ฉ๐Ÿผ‍โš•๏ธ #NursesWeek #nursesday MEET: Maggie Ryan, RN BSN and Medical Liason Courtney Dion, LGMD Mom, RN, President & Co-Founder ๐Ÿ‘‰๐Ÿผ Swipe to read: WHATS YOUR WHY? and how these two are culminating their professional attributes to focus on children and families living with LGMD #thedionfoundation #mda #limbgirdlemusculardystrophy #musculardystrophy #nochildleftbehind #lgmd #lgmd2c #genetherapy #cureraredisease #ultrararedisease #rarediseaseawareness #pediatric #sarcossuck #lgmdr5
time is the one thing that can never be retrieved living with a progressive muscle wasting disease, every day, we have muscle damage that can’t be reversed. every day matters โŒ›๏ธ the time is NOW to find a cure for LGMD thank you for the support - every contribution, volunteer, like/share/comment will help us further our mission - to find a cure for these cruel diseases #dionstrong #sarcoglycanopathy #thedionfoundation #mda #limbgirdlemusculardystrophy #musculardystrophy #nochildleftbehind #lgmd #lgmd2c #genetherapy #cureraredisease #ultrararedisease #rarediseaseawareness #pediatric #sarcossuck #lgmdr5
Monthly Newsletter! Inside: Foundation highlight, team member spotlight and ๐Ÿ“ข EVENTS ๐Ÿ“ข THANK YOU for the overwhelming support โค๏ธEvery like, share, comment, subscription and contribution helps to further our mission - to raise awareness and find a c
Monthly Newsletter! Inside: Foundation highlight, team member spotlight and ๐Ÿ“ข EVENTS ๐Ÿ“ข THANK YOU for the overwhelming support โค๏ธEvery like, share, comment, subscription and contribution helps to further our mission - to raise awareness and find a cure for these cruel diseases! #dionstrong #thedionfoundation #mda #limbgirdlemusculardystrophy #musculardystrophy #nochildleftbehind #lgmd #lgmd2c #genetherapy #cureraredisease #ultrararedisease #rarediseaseawareness #pediatric #sarcossuck #lgmdr5 @lgmdawareness
hope /hลp/ noun 1. a feeling of expectation and desire for a certain thing to happen 2. a feeling of trust we, at the Dion Foundation, are motivated and inspired by a deep sense of #HOPE that we WILL find a way to get these beautiful souls the life
hope /hลp/ noun 1. a feeling of expectation and desire for a certain thing to happen 2. a feeling of trust we, at the Dion Foundation, are motivated and inspired by a deep sense of #HOPE that we WILL find a way to get these beautiful souls the lifesaving treatments they need ๐Ÿ™๐Ÿป ๐Ÿ’™ #thedionfoundation #mda #limbgirdlemusculardystrophy #musculardystrophy #nochildleftbehind #lgmd #lgmd2c #genetherapy #cureraredisease #ultrararedisease #rarediseaseawareness #pediatric #sarcossuck #lgmdr5
HOW? How did we get a rare neuromuscular genetic disease with NO family history, and seemingly “healthy” parents? ๐Ÿงฌ LGMD 2C is inherited in a recessive manner - in which a copy of a defective gene is passed down from each parent - res
HOW? How did we get a rare neuromuscular genetic disease with NO family history, and seemingly “healthy” parents? ๐Ÿงฌ LGMD 2C is inherited in a recessive manner - in which a copy of a defective gene is passed down from each parent - resulting in expression of the disease in children. These genetic mutations can be carried for generations without causing disease, but when two mutations are present (one from mom, one from dad) a recessive disease is expressed ๐Ÿงฌ ๐Ÿงฌ 25% chance that each child would inherit BOTH “faulty” genes and have LGMD 2C ๐Ÿงฌ 50% chance that each child would inherit ONE gene and be a carrier, without symptoms, of LGMD2C ๐Ÿงฌ 25% that each child would inherit NONE of the faulty genes ๐Ÿงฌ Please share, like, comment, donate to help us raise awareness for these rare pediatric diseases ๐Ÿ™๐Ÿป #HOPE #thedionfoundation #mda #limbgirdlemusculardystrophy #musculardystrophy #nochildleftbehind #lgmd #lgmd2c #genetherapy #cureraredisease #ultrararedisease #rarediseaseawareness #pediatric #lgmdr5
“Make the most of today. Don’t allow the troubles of yesterday and the worries of tomorrow to steal the gift of right now” ๐Ÿ’™ #thedionfoundation #mda #limbgirdlemuscular #musculardystrophy #nochildleftbehind #lgmd #lgmd2c #genether
“Make the most of today. Don’t allow the troubles of yesterday and the worries of tomorrow to steal the gift of right now” ๐Ÿ’™ #thedionfoundation #mda #limbgirdlemuscular #musculardystrophy #nochildleftbehind #lgmd #lgmd2c #genetherapy #cureraredisease #ultrararedisease #rarediseaseawareness
FOUNDATION SPOTLIGHT! Thank you @lgmdawareness for all you do in raising awareness and advocating for individuals living with limb-girdle muscular dystrophy. LGMD Awareness Foundation has an incredible website with resources, events and various c
FOUNDATION SPOTLIGHT! Thank you @lgmdawareness for all you do in raising awareness and advocating for individuals living with limb-girdle muscular dystrophy. LGMD Awareness Foundation has an incredible website with resources, events and various campaigns to raise awareness. Join us as we support them! www.lgmd-info.org #thedionfoundation #mda #limbgirdlemuscular #musculardystrophy #nochildleftbehind #lgmd #lgmd2c #genetherapy #cureraredisease #ultrararedisease #rarediseaseawareness
Navigating a rare childhood disease makes you realize one profound thing. And it’s to enjoy the little things in life, for one day you may look back and realize they were the big things. Today, Peter can keep up with his little cousin. For tomorrow, we don’t know what that brings. But we do know that today, today we enjoy the little things. ๐Ÿ’™Read more about our cause on our website. Link in bio. Our mission, your help. #thedionfoundation #mda #limbgirdlemuscular #musculardystrophy #nochildleftbehind #lgmd #lgmd2c #genetherapy #cureraredisease #ultrararedisease #rarediseaseawareness
Don’t forget to subscribe on our website to receive our monthly newsletter! In the coming weeks we are finalizing two exciting events. Details to come. Visit our site to subscribe so you don’t miss them ๐Ÿ“ฌ We hope everyone has a great
Don’t forget to subscribe on our website to receive our monthly newsletter! In the coming weeks we are finalizing two exciting events. Details to come. Visit our site to subscribe so you don’t miss them ๐Ÿ“ฌ We hope everyone has a great week. Happy Sunday! #thedionfoundation #mda #limbgirdlemuscular #musculardystrophy #nochildleftbehind #lgmd #lgmd2c #genetherapy #cureraredisease #ultrararedisease #rarediseaseawareness
"Hope is not pretending that troubles don't exist. It is the trust that they will not last forever, that hurts will be healed and difficulties overcome. It is faith that a source of strength and renewal lies within to lead us through the dark in
SAVE THE DATE FOR OUR HUSTLE FOR THE MUSCLE 5K! Our first ever road race will be held on Sunday, October 1st in Waltham, MA. The race will end at the Mighty Squirrel Brewery - registration opens in July! This event will be for anyone: runners, walk
Right now, Maggie is able to go to dance school, keep up with her brothers and friends and accomplish any task she sets her mind to. But unfortunately, everyday that passes her muscles waste away a little bit. Although we are terrified of the future
VOICE OF THE PATIENT ๐Ÿ“ข Now posted: the collaborative report of patients’ and caregivers’ perspectives of living with LGMD our hope for a potential treatment! ๐Ÿ“ข #lgmdpfdd ๐Ÿ’ฌThe information in the Voice of the Patient report may be used Kids with Peter & Maggie’s type of Muscular Dystrophy only have a short window of time before the disease will completely interrupt their daily lives. There will be a time when play time isn’t the same, when recess is no longer fun, a We would like to take a quick moment to say thank you to everyone who made our first golf tournament launch such a success. 36 foursomes sold out in less than 24 hours!! Bring on October 23rd ๐Ÿ’™โ›ณ๏ธThank you thank you thank you! Now we are in pursuit 1ST ANNUAL GOLF TOURNAMENT REGISTRATION IS NOW LIVE! The Dion Foundation is so excited to announce our first annual Golf Classic! This day will be dedicated to raising funds for research and spreading awareness for Limb Girdle Muscular Dystrophy. We In honor of National Nurses’ Week - this month we would like to spotlight two of our resident nurses and Foundation team members! ๐Ÿ‘ฉ๐Ÿผ‍โš•๏ธ #NursesWeek #nursesday MEET: Maggie Ryan, RN BSN and Medical Liason Courtney Dion, LGMD Mom, RN,
time is the one thing that can never be retrieved living with a progressive muscle wasting disease, every day, we have muscle damage that can’t be reversed. every day matters โŒ›๏ธ the time is NOW to find a cure for LGMD thank you for the suppor
Monthly Newsletter! Inside: Foundation highlight, team member spotlight and ๐Ÿ“ข EVENTS ๐Ÿ“ข THANK YOU for the overwhelming support โค๏ธEvery like, share, comment, subscription and contribution helps to further our mission - to raise awareness and find a c hope /hลp/ noun 1. a feeling of expectation and desire for a certain thing to happen 2. a feeling of trust we, at the Dion Foundation, are motivated and inspired by a deep sense of #HOPE that we WILL find a way to get these beautiful souls the life HOW? How did we get a rare neuromuscular genetic disease with NO family history, and seemingly “healthy” parents? ๐Ÿงฌ LGMD 2C is inherited in a recessive manner - in which a copy of a defective gene is passed down from each parent - res “Make the most of today. Don’t allow the troubles of yesterday and the worries of tomorrow to steal the gift of right now” ๐Ÿ’™ #thedionfoundation #mda #limbgirdlemuscular #musculardystrophy #nochildleftbehind #lgmd #lgmd2c #genether FOUNDATION SPOTLIGHT! Thank you @lgmdawareness for all you do in raising awareness and advocating for individuals living with limb-girdle muscular dystrophy. LGMD Awareness Foundation has an incredible website with resources, events and various c
Navigating a rare childhood disease makes you realize one profound thing. And it’s to enjoy the little things in life, for one day you may look back and realize they were the big things. Today, Peter can keep up with his little cousin. For to
Don’t forget to subscribe on our website to receive our monthly newsletter! In the coming weeks we are finalizing two exciting events. Details to come. Visit our site to subscribe so you don’t miss them ๐Ÿ“ฌ We hope everyone has a great