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Newsletter
October 2021
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Welcome to our October newsletter which features all the latest news and events from the neuromuscular community.
Articles in the edition...
- TREAT-NMD Welcomes new CEO
- TREAT-NMD Statement on Stem Cell Tourism
- TREAT-NMD Advisory Committee for Therapeutics (TACT) hosts 25th meeting and will be in person again in 2022!
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TREAT-NMD Welcomes New CEO
We are pleased to announce that we have appointed David Allison as the new CEO of TREAT-NMD services Ltd (the not for profit legal entity established to manage the financial, operational and legal aspects of TREAT-NMD) who will be working closely with Jim Dowling, the TREAT-NMD executive chair...
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TREAT-NMD Statement on Stem Cell Tourism
It has come to the attention of TREAT-NMD that families of patients with Duchenne muscular dystrophy are raising money to fund a ‘lifesaving’ stem cell treatments. The TREAT-NMD executive committee would like to issue the following statement...
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7th TREAT-NMD International Conference 2022
There’s exciting news around the programme for the TREAT-NMD Conference, 15th-17th June 2022, Vancouver Canada...
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TREAT-NMD Advisory Committee for Therapeutics (TACT) Hosts 25th Meeting and will be in person again in 2022!
The TREAT-NMD Advisory Committee for Therapeutics held its 25th meeting (virtually) on the 23rd of October. The Autumn meeting considered advice on pre-clinical work for Duchenne muscular dystrophy (DMD). We were delighted to welcome the application from Professor Guglielmo Sorci from the University of Perugia in Italy...
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Korean Translation of the Duchenne Muscular Dystrophy Guide for Families is now available!
We are delighted to announce that the DMD Guide for Families is now available in Korean. The guide is based on the 2018 Standards of Care for Duchenne Muscular Dystrophy (DMD); it provides valuable information to families and patients about aspects of care and treatment...
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Retirement symposium - Nathalie Goemans
TREAT-NMD executive committee member Nathalie Goemans retired in 2020. Due to the pandemic her retirement symposium and formalities were postponed to October 15 2021...
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TREAT-NMD Expert Masterclasses
Our Masterclasses are a fantastic opportunity to share current best practice with experts and other healthcare professionals from around the world but don’t take our word for it. Joanna Tokarska, a Physiotherapist from the National Chamber of Physiotherapists, Poland, reviews our LGMD European Masterclass which took part back in April of this year...
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Duchenne Mother Fights for Social Security Benefits for Individuals with Duchenne Muscular Dystrophy
Tiffany Cook, mother to a son with Duchenne muscular dystrophy and Senior Director of CureDuchenne Cares, has faced the financial burden of Duchenne for 15 years, and decided enough was enough. In 2018, Tiffany, filed an application to add Duchenne to the Social Security Administration Compassionate Allowance List (CAL). Three years later, her application was just approved...
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Science Will Win Podcast
The first episode of Science Will Win a new podcast from Pfizer is out now...
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Multi-language Subtitles added to The Speak Foundations 2021 International Limb Girdle Muscular Dystrophy Conference
The Speak Foundation (the first patient-led organisation for muscular dystrophy) is excited to announce that YouTube has now enabled subtitles for all of their 2021 International Limb Girdle Muscular Dystrophy Conference programming...
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New Education Event: Duchenne Muscular Dystrophy Early Diagnosis Seminar
TREAT-NMD is launching a new education initiative in Duchenne Muscular Dystrophy. The first TREAT-NMD Duchenne Muscular Dystrophy Early Diagnosis Seminar will take place in Spring 2022 (date TBC). This educational event will explore how to identify the signs of Duchenne Muscular Dystrophy...
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Congenital Myopathies Expert Masterclass, 2022
Whilst the programme for the new Congenital Myopathies Expert Masterclass is being finalised, TREAT-NMD can reveal that this event will be taking place online to European audience on Wednesday 23rd & Thursday 24th February 2022...
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Registration Open for the EPNS Congress
Registration is now open for the 14th EPNS Congress. The congress will take place on 28 April – 2 May 2022...
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Results of Applications Announced for EURORDIS Winter School
EURORDIS has created training to expand the understanding of how pre-clinical research translates into real benefits for rare disease patients aimed at patient representatives...
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