- Vivir con FSHD
-
- Participa
-
- Investigación y asistencia clínica
- Quiénes somos
- Noticias y medios de comunicación
- Eventos
- Blog
- BetterLife
- Donar hoy
We can change the future of FSHD. Double your impact while matching funds last!
Español de MéxicoWe can change the future of FSHD. Double your impact while matching funds last!
Español de Méxicoby June Kinoshita, FSHD Society
Imagine that you are in an FSHD clinical trial a few years in the future. On the first day of the trial, you answer a few questions about how you are feeling and functioning. Then you lie down on a narrow but comfy table and slide into the narrow bore of a magnetic resonance imaging (MRI) machine. You need to remain still as the MRI scans your entire body. Good time to take that nap! When you emerge an hour later, you’re told you’re done, to your pleasant surprise.
How great is it, you think, that with just an MRI, the researchers can see which of your muscles are starting to show signs of fat and scar tissue forming in the muscle. You just knew something was up with that muscle. Now you have irrefutable proof. The trial researchers can compare images taken 12 months apart, while you were on an experimental treatment, to see if the deterioration of your muscles has slowed, stopped, or even reversed itself.
This is the hoped-for future, when MRI will have been validated as a reliable way to measure damage to muscles, sensitive enough to detect meaningful changes over 12 months. But to get there, 200 people (including 50 in Canada) will need to volunteer to participate in the ongoing MOVE+ (“Move Plus”) sub-study. This is a hugely important study to improve how clinical trials for FSHD are conducted, and it urgently needs more people to join.
If you are interested in making an important contribution to advancing FSHD clinical trials, please consider enrolling in MOVE+.
Based on feedback from the community, the study team has made some changes:
If you have been diagnosed with FSHD, are between 18 and 75 years of age, and are still able to walk without support (participants are able to use orthotics, walking sticks, and canes) then you are eligible for the MOVE+ sub-study.
So how do you join MOVE+? Email Michaela Walker and she will answer your questions and connect you to the study site nearest you.
English English 
العربية
Español de México
Français du Canada
简体中文
Hello. I am from Ukraine. I am currently under temporary protection in Germany, Cologne. I can move with a walker. Diagnosed FSHD1. I am 48 years old. C would love to take part in your project. Is it possible to take part in Germany or just need to go to America?
I believe the RESOLVE natural history study of FSHD is being done in Munich. That is another very important study but there is no MRI. The only location at the moment for the MOVE+ study in Europe is the University of Sheffield in the UK. Michaela Walker can put you in touch with the appropriate study coordinators.
I am interested in more info about this study. I am 74. My weakness is in my core, so although I can walk ok, I am very bent over, so I use a light-weight walker. Can I be part of this study? Please call me.973-476-4072.
Sondra Schuman
Akciğer embolisinin teşhisi genellikle bir dizi tıbbi test ve görüntüleme prosedürü kullanılarak konur. Bu testler arasında D-dimer kan testi, göğüs röntgeni, bilgisayarlı tomografi BT anjiyografi, akciğer perfüzyon sintigrafisi ve echokardiyografi yer alabilir. Bu testler, pıhtının varlığını doğrulamaya, pıhtının büyüklüğünü ve konumunu belirlemeye ve akciğerlerdeki kan akışını değerlendirmeye yardımcı olabilir.
Thanks Sondra for wanting to participate. Please contact MIchaela Walker. She will discuss the study details and your eligibilty with you.
Is it available in the Uk ?
In the UK, the University of Sheffield will be participating. For more information, contact Jonathan Street at sth.neuromuscularresearch@nhs.net
I’d love to participate, but your link asks me to set up gmail through my browser, which I prefer not to do. Can we just get a correct email address for Michaela Walker so that we can contact her through our regular email provider?
Thanks
I am interested. I am 74 and walk with AFO’s, but I am still as active as I can be. Where will this study take place?
The Clinical Trial Research Networks sites are participating in the study: https://www.fshdsociety.org/therapeutic-accelerator/ctrn/
Again, Michaela Walker can guide you regarding the closest study base don where you live.
Yes, I would like to join Move+. I would gladly participate in such an MRI based study.
This sounds like an amazing study
I would love to take part
I have emailed you for more information
Can you please share the contact email? The link doesn’t work for me. Thank you
The contact email is mwalker20 @ kumc.edu
Delete the spaces. I put them in to hopefully thwart bots.
I am interested getting involved with this study.
I am 60 years of age and walk with a cane. I live in Syracuse, NY
FSHD
The University of Rochester would be the closest site. Please contact Michaela Walker so she can help you get enrolled.
I tried to email Michaela Walker but the email given was not recognized. I would like to contribute to the study if possible.
The contact email is mwalker20 @ kumc.edu
Delete the spaces. I put them in to hopefully thwart bots.
I know I’m over the age limit – I’m 78 ,but I’d like to be involved in the study . I can walk without support but am bent over as I have weak core muscles so I use a rollator so that I can walk erect .
Thank you so much for your desire to help! Unfortunately, they need to adhere to the study protocol regarding age limits. You’re an example to others who may be inspired to get involved!
50 fshd still walking and functioning i
You sounds like a great candidate for this study. We hope you enroll!
I did just such a study with John Johns Hopkins in Baltimore between 2014 and 2019. I presume that the leaders of this study know about that work. I’m 75 so I’m too old now but it was a great experience and it really did show significant change for me in that time period. It also showed muscle loss in some areas that I did not anticipate and explain some things that were a mystery to me.
I am interested in getting involved with this study.
I am 63 years of age. I live in Belgium
Lieve
The closest location is the University of Sheffield in the UK.
Hi, I’m interested in participating if it’s possible to do so from Australia! I can travel within New South Wales to attend appointments if we have a hospital that can support this research.
There is a study site at the University of Melbourne! Contact Dr. Ian Woodcock (Ian.Woodcock @ rch.org.au )
My father is 64 years old, still walking and doing daily chores (cooking) with some difficulties. Is there any availability for Brazil? What would the recommendation here?
Thanks!
There will be a site at the University of Sao Paolo at the new FSHD clinical trial research network site there, under Dr. Christiane Moreno. It’s not up and running yet, but contact Eilene Dutra eliene.dcampos@hc.fm.usp.br for updates.
Ik ben bijna 63jaar. ik loop zonder hulpmiddelen en ik werk nog al wordt dat wel zwaar. Ik zou graag mee willen doen zodat ik gerichter kan trainen om zolang mogelijk stabiel te blijven. Ik ben nu bij het Radboudziekenhuis onder behandeling in Nijmegen.
Hello!!!
The twin brothers Nazip and Fazit, born in 1968 from Bashkiria (a Republic in Russia), write to you.
We have been suffering from Facioscapulohumeral muscle dystrophy (FSHD1) since the age of 15. We are 55 years old now.
One of us is engaged in mental work (accountant), the other in physical work (at the moment he can no longer work).
We really hope that you will not ignore us, we are ready to participate in experiments on the study of muscle dystrophy disease and in experimental treatment methods.
Sorry for the poor English translation.
28.04.2024
Sincerely, the twin brothers