good

excellent class!!

Never had this info years ago and traveled to several places to finally get an answer. It was the biopsy that found it

Yes everything was right on. I have to children with CM -DTF Both grow. One has passed away in his sleep at age 32 6 yrs ago My other son is 30 now and is doing great

Did you have to suction her mouth? Does she have a suction machine too?

Please help me

My child muscular dystrophy from Lama 2

This problam in my 10years old baby

Exercises for height growth at legs only ?

9 years later and I still don’t know what the quality of the stretch does

Do you sell these?

One Happy Boy ! Mom gave him the freedom to do things and go places

This was great! So well written and documented. You mentioned 5 subtypes why wasn’t LMNA followed and talked about? My daughter who is 2 has LMNA, it’s a little disheartening that her subtype was not mentioned or followed 😢but every other was talked about.

wow that's awesome

My daughter has lama-2 related and we are from the Detroit area.

A very clever idea - I was thinking of creating something and I might have a go - but what is a wisp?

howdy?, Enjoyed, thiis is incredible travel!have a nice day,=)

Very well done, thanks for pulling this together.

I loved hearing the stories the patients themselves and families. I too have SELENON, as well as my little brother. I appreciated seeing the perspectives from the adults affected. I am filled with hope and comfort after watching this. Thank you all for sharing your stories and showing us what living your best life is.

9:18 ultrasound

I have LMNA mutation that has caused cardiac arrest a few times. I was fortunate to be near CPR training persons the first time. I now have a defibrillator. I seek a cure. I am involved with the University of Washington. I am 64 and I am currently healthy except for the LMNA problem.

I just found this video. I have LMNA mutation. I have already experienced cardiac arrest. This potential therapy is the only thing that will save my life. I am at a loss that my cardiologists have not informed me of this condition. I have been genetically scanned. I am currently going to the University of Washington. Heart transplant seems to be on the list of possible treatments. I do not consider a transplant to be a fix for the problem. I have leg issues as well.

What an amazing video and an amazing group of people! So impressed with the Cure CMD Community and Rachel Alvarez’s leadership. Way to go!

The webinars are so helpful and informative! Thank you for this

What a sweet,precious little guy! Your boy really seemed to like & appreciate getting such an awesome gift,made specially for him. It was so cute seeing how enthused he got as he was giving it a test spin/using it outside! I loved the part where he really started booking it @ one pt.,lol..God bless & keep you all safe & Happy Easter too!

I’m new to this community, but automatically disappointed that the captions for these videos have not been edited for accuracy and punctuation. Accessibility should be a priority for an organization of this kind.

This was truly informative & helpful! Thanks so much for presenting this for our community. As a person with Titinopathy, Tomeca Goodwin’s presentation has given me some fantastic ideas on how to improve my life. Thanks so much!

Awesome webinar! Many thanks to all of the speakers for being so real and enlightening! Great job!

Quality of video not good

Hi great video. Do you have video on how to build an aquatic walker ?

I had a genetic test, but they were looking for Marfans syndrome (fibrilin gene mutation), so what a surprise when i was told I didn't have marfans syndrome, but this Titin mutation. It explained how I got congestive heart failure out of nowhere when I was 38 years old (male). I hope there is more research in this area. I've been living with CHF for 12 years now. I'm still living. But the heart medications are just fixing the symptoms, not the actual problem.

Amazing content on a lesser known topic, Thank you.

My little nephew was diagnosed with UCMD one month after his birth. He is 2.5 now. He still cant walk. I am positive that today's science has the tools to find treatments, if not cures, for these conditions. All that is missing are a lot of money. Medical research needs a lot of money.

I'm newly diagnosed with mutated TTN and MYH3 genes with a complete spine that's been trying to fuse itself requiring lots of procedures to date. I along with my half brother have dialated cardiomyopathy and am starting to experience issues with tachycardia. My echoes to date show some fluctuation in EF's. The tachy episodes as often as they are appear to be sinus rhythm with occasion of atrial tachycardia. My meds now include ivabradine to help with a more appropriate HR. So far so good, but I have had to commence on a anxiety/sleep medication as my body experiences adrenaline dumps especially in upper body.

This is wonderful, thank you so much. We were trying to find a walker with large wheels for my 2.5 year old grandson with similar issues. Thank you again

I couldn't stop crying while I watch her. My 2 yr old son is diagnosed last month with Ullrich collagen vi muscular dystrophies. He was born with hip dysplasia and was on a spica cast on and off for 16 months. He is 2 now and we are waiting for another surgery for his hip and hamstrings. My son can't stand and won't be able to get up without our help. I'm happy to see you walking Sophie and praying that our doctor and scientist will find the cure for this rare disease.

wir haben einen Sohn mit SEPN1 .... leider kann ich nicht so gut english das ich das verstehe.... und es war so wichtig für uns 😢

i would love to know how she is getting on now she is older!

Thank you for sharing this in a way that’s easy to understand! I am like Jimmy and so many people still don’t have knowledge on CM

I am very grateful for this webseries about pulmonary care, I look forward to the other episodes subtitled in Spanish. Thank you very much for your valuable work!

Mag kano CMD

jennifer .. how do you make one that adaptable for adults that has a canvas seat so a person could sit if they got tired. Like the baby sit and walk seats

My daughter this disease. Plz any treatment

Sophie is a great girl, I wish her and her family the best.

Please I need subtitles in Spanish

I was born with congenital muscular dystrophy and I am from Cuba, I read the Spanish edition of the book "Management of congenital muscular dystrophies" and it helped me a lot, I saw the first episode of this web series and it has helped me even more but I need to see the other episodes , for that I need subtitles in Spanish because I speak very little English, please I need subtitles in Spanish. Thank you very much for all this

Absolutely fabulous presentation. Thank you for sharing so many ideas and words of wisdom. Both of your tips on self care, actualization, and empowerment. were exceptionally helpful! Thank you!

You are all beyond amazing!!! ❤❤❤❤❤❤

Correct. We're not getting her a dog. hahaha

Wow 😁..amazing