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Cure SMA
United States
Приєднався 25 чер 2008
Cure SMA is dedicated to the treatment and cure of spinal muscular atrophy (SMA)-a disease that takes away a person’s ability to walk, eat, or breathe. It is the number one genetic cause of death for infants.
Since 1984, we’ve directed and invested in comprehensive research that has shaped the scientific community’s understanding of SMA. We are currently on the verge of breakthroughs in treatment that will strengthen our children’s bodies, extend life, and lead to a cure.
We have deep expertise in every aspect of SMA-from the day-to-day realities to the nuances of care options-and until we have a cure, we’ll do everything we can to support children and families affected by the disease.
Learn more about how you can help us reach a treatment and cure at www.cureSMA.org.
Since 1984, we’ve directed and invested in comprehensive research that has shaped the scientific community’s understanding of SMA. We are currently on the verge of breakthroughs in treatment that will strengthen our children’s bodies, extend life, and lead to a cure.
We have deep expertise in every aspect of SMA-from the day-to-day realities to the nuances of care options-and until we have a cure, we’ll do everything we can to support children and families affected by the disease.
Learn more about how you can help us reach a treatment and cure at www.cureSMA.org.
Congressional Committees and Why They Matter
In this Cure SMA video, you will learn about congressional committees and why they matter.
Learn more about Cure SMA's advocacy effort and how you can get involved here: www.curesma.org/cure-sma-advocacy/
Learn more about Cure SMA's advocacy effort and how you can get involved here: www.curesma.org/cure-sma-advocacy/
Переглядів: 54
Відео
How Your Gift Benefits Teens & Adults with SMA featuring Eleanor Bolton
Переглядів 4298 місяців тому
Cure SMA's Teen & Adult Independence package aims to provides a set of helpful items to help teens and adults with SMA gain further independence with activities of daily living. Check out more of our teen and adult resources on our website: www.curesma.org/teens-and-adults/
U.S. Transportation Secretary Highlights the SMA Community's Advocacy for Accessible Air Travel
Переглядів 2368 місяців тому
U.S. Transportation Secretary Pete Buttigieg recently highlighted the SMA community's advocacy for accessible air travel. Check out his message above and learn more about Cure SMA's advocacy initiatives here: www.curesma.org/cure-sma-advocacy/
SMA Clinical Trials: What You Need to Know
Переглядів 4619 місяців тому
This webinar includes information about the optimization of current therapies, combination therapies, and Cure SMA resources where you can find more information on these topics. Also included is a refresher of the regulatory process after a new drug application is filed with the FDA. Additionally, the full presentation, which features information about ongoing SMA clinical trials, combination t...
Cure SMA's Virtual Resource Fair
Переглядів 3909 місяців тому
Cure SMA’s national support programs are available to all individuals with spinal muscular atrophy (SMA) and their families who reside in the U.S. Most of these resources are available at no cost. Learn more: www.curesma.org/community-support/
Baking a Difference with Cure SMA, Dana Perella, and Molly Wilkinson!
Переглядів 409 місяців тому
Hello fellow bakers! Thank you for your support of Cure SMA by helping us bake a difference for people with spinal muscular atrophy (SMA). Baking a Difference was started by Dana Perella, a kid like you, with a love of baking who began selling her sweet treats to raise money for kids with rare diseases. In this video, hear from the Cure SMA team, Dana, and Molly Wilkinson, a renowned baker, pas...
2023 Cure SMA Hill Day - Community Stories
Переглядів 8710 місяців тому
On October 5th, our group of SMA community leaders from across the country rolled through the halls of Congress in support of policies and investments to address unmet needs for children and adults with SMA. This video captures the essence of Hill Day and shares the stories of our SMA community's experience. Advocacy is critical in advancing SMA-related policies, and the voices of individuals w...
Community Stories - The Lakhman Siblings
Переглядів 8510 місяців тому
Community Stories - The Lakhman Siblings
Community Stories - The Brzycki Family
Переглядів 10910 місяців тому
Community Stories - The Brzycki Family
The Katyan's SMA Story
Переглядів 26410 місяців тому
Learn about the Katyan's experience when their son was diagnosed with SMA. To learn more about Cure SMA, visit www.curesma.org.
Hear from the SMA Community During 2023 SMA Awareness Month!
Переглядів 676Рік тому
Spinal muscular atrophy (SMA) is a progressive neurodegenerative disease that affects the motor nerve cells in the spinal cord and impacts the muscles used for activities such as breathing, eating, crawling, and walking. Learn more at: www.curesma.org/sma-awareness-month/
Walk-n-Roll with Cure SMA!
Переглядів 197Рік тому
The Cure SMA Walk-n-Roll is a nationwide fundraising program that brings communities together to support Cure SMA’s funding of life-changing research, resources, and programming for those impacted by spinal muscular atrophy (SMA). No matter how you plan to participate in our Walk-n-Roll program, this is one of the best ways to fundraise for people with SMA in your community and beyond. Find you...
How to Set Up a Congressional Meeting
Переглядів 49Рік тому
In this video, Cure SMA Advocacy will walk you through the steps for requesting a congressional meeting and share tips for running an effective meeting. To become a Cure SMA Advocate, go to the Cure SMA Action Center: www.curesma.org/advocacy-action-center/ Narrated by Jim Willison
Congressional Offices - Advocacy Guide
Переглядів 57Рік тому
In this video, Cure SMA Advocacy will take you inside a typical Washington DC congressional office to explain key staff positions, their roles inside that office, and how you, as a Cure SMA advocate, can work with congressional staff to educate and advocate in support of SMA community priorities. To become a Cure SMA Advocate, go to the Cure SMA Action Center: www.curesma.org/cure-sma-advocacy/...
How to Structure a Congressional Meeting
Переглядів 53Рік тому
How to Structure a Congressional Meeting
Sign Up to Be an Advocate and Take Action
Переглядів 90Рік тому
Sign Up to Be an Advocate and Take Action
Cure SMA's 2022 Year-End Campaign Kick-Off!
Переглядів 585Рік тому
Cure SMA's 2022 Year-End Campaign Kick-Off!
Cure SMA and Biohaven Pharmaceuticals Clinical Trial Update Webinar
Переглядів 1,2 тис.2 роки тому
Cure SMA and Biohaven Pharmaceuticals Clinical Trial Update Webinar
April 2022 Cure SMA and Novartis Gene Therapies Clinical Trial Update Webinar
Переглядів 1,2 тис.2 роки тому
April 2022 Cure SMA and Novartis Gene Therapies Clinical Trial Update Webinar
Cure SMA and Biogen 2022 Clinical Trial Update Webinar
Переглядів 6802 роки тому
Cure SMA and Biogen 2022 Clinical Trial Update Webinar
Do It Yourself (DIY) Fundraising Week at Cure SMA!
Переглядів 1462 роки тому
Do It Yourself (DIY) Fundraising Week at Cure SMA!
Message from Nick Farrell - Cure SMA Board Match Through December 31st!
Переглядів 1882 роки тому
Message from Nick Farrell - Cure SMA Board Match Through December 31st!
Physical Therapy Webinar Series: Exercises at Home for the Walker
Переглядів 5412 роки тому
Physical Therapy Webinar Series: Exercises at Home for the Walker
It's #GivingTuesday! Hear Why You Should Support Cure SMA
Переглядів 1662 роки тому
It's #GivingTuesday! Hear Why You Should Support Cure SMA
Why Give to Cure SMA on #GivingTuesday?
Переглядів 1102 роки тому
Why Give to Cure SMA on #GivingTuesday?
My nice passed away at 7 months old from this in 2018 pretty much her whole short life was in the hospital
Hi mam my name is Nikitha bai l am from India and I am suffering from spinal masqular astrophi plz help me to qure my health condition 🙏🙏🙏
Hello my dear, for your perfect cure contact DR Adewale on UA-cam
Hi mam my name is Nikitha bai l am from India and I am suffering from spinal masqular astrophi plz help me to qure my health condition 🙏🙏🙏🙏🙏
hello mam apki age kitni hai aur aapki condition kesi hai sma se because mujhe bhii yahi haii abhi m 23 ka hu
Go Cara! I will be practicing Wii for next year!
Excuse me, what is the baseline anti-AAV9 antibody titers, if 1:50 could be effective to use the zolgensma, look forward your response, thank you a lot.
Hi sir my name is Nikitha bai l am from India. I am suffering from spinal masqular astrophi plz help me to qure my health condition
Hi mam my name is Nikitha bai l am suffering from spinal masqular astrophi plz help me to qure my health condition 🙏🙏🙏🙏
Hi sir my name is Nikitha bai l am suffering from spinal masqular astrophi plz help me to qure my health condition 🙏🙏🙏🙏🙏🙏🙏
Sir, our baby also has type 2, we do not have money, we have an injection of Rs 17 crores.😭😭
Sir, our baby also has type 2, we do not have money, we have an injection of Rs 17 crores.
Sir, our baby also has type 2, we do not have money, we have an injection of Rs 17 crores.
traducir a español
Pete is honest, up-front, smart and capable and he seems to genuinely care about all people. It's heartening to see a government official with competence, dignity and values. We are fortunate to have him.
❤❤❤❤ love it!! Excelent for 🧑🏻🦽
really appreciate the work that will be done in this space. It is extremely important that we make travel more accessible and easy versus always a nightmare waiting to happen. Thank you
❤❤❤❤❤❤
Thanks for the update on all of this. Great, informative info. Keep up the good work.
Sir, our baby also has type 2, we do not have money, we have an injection of Rs 17 crores.
Hi Iam from India and my daughtet is suffering from SMA type 1. She is 06 month old please help if you can.....
🙏🏽
I am from Algeria. I have a daughter who suffers from spinal muscular atrophy. She is 7 months old. She is now suffering silently and is dying slowly... In countries where I am not even aware of the disease... knowing that I have a child who died in 2019 with the same disease.... Can you help me and sponsor With the treatment of my daughter, I lost all means, and I could no longer bear to see her get tired and die, as is the case with her brother.
I am from Algeria. I have a daughter who suffers from spinal muscular atrophy. She is 7 months old. She is now suffering silently and is dying slowly... In countries where I am not even aware of the disease... knowing that I have a child who died in 2019 with the same disease.... Can you help me and sponsor With the treatment of my daughter, I lost all means, and I could no longer bear to see her get tired and die, as is the case with her brother.
well, sadly you can tell something is wrong with the child.
Such a great interview. Very helpful for my book club discussion. Thank you.
What happens to children born with SMA whose parents are poor and have no health coverage. The drug for this costs two million $$$$. What do they do?
Also, parents who cannot afford much are usually on Medicaid - which would cover care. As long as the parents are proactive and take advantage of these things, it wouldn't be an issue. If not, they'd just get a huge bill in the mail every month.
This therapy was never mentioned when my niece was diagnosed with sma type 1 . She died at 7 months even with the therapy her bill exceeded 1 million dollars.
@@JoeT-re5ro So sad, so sorry. Every expectant mother should be made aware of this dreadful disease.
I AM ANDYS ARMY
Giving thanks to #DRUROKO is something I will always take personal because he brought me back to my full health... ua-cam.com/channels/WFpuQgd-AZ8UTmlwLOJiiw.html..
Giving thanks to #DRUROKO is something I will always take personal because he brought me back to my full health... ua-cam.com/channels/WFpuQgd-AZ8UTmlwLOJiiw.html..
I appreciate your best effort that you can heal me from this herpes virus #druromi I highly give you the respect 💯
How can I get treatment for sma india?
How can I get treatment for sma india?
How can I get treatment for sma india?
How can I get treatment for sma india?
How can I get treatment for sma india?
How can I get treatment for sma india?
How can I get treatment for sma india?
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I want to use this medium to say a very big thank to #DREWI1 who used his herbs to cure me from Herpes
I want to use this medium to say a very big thank to Dr Ewi1 who used his herbs to cure me from Herpes ua-cam.com/channels/YXkCmbhWCpfXIbnBuXCpUQ.html
Am so happy to say this here that I am now HSV free with the help of Drewi1 who I discover his UA-cam channel.
Bring recommended to #DREWI1 was a blessing after years of suffering I have finally been cured from herpes.
Bring recommended to #DREWI1 was a blessing after years of suffering I have finally been cured from herpes.
Dr ewi1 have a permanent cure for HSV1-8
Dr ewi1 have a permanent cure for HSV1-8
Your genuine contribution towards healing my herpes infection Dr Ogoh shows you have a good heart and we are greatful for all you do sir 😇
Pay respect to dr oiwoh. Supernatural herbs he got, Now I’m HSV free.Thanks for saving me doc.
Pay respect to dr oiwoh. Supernatural herbs he got, Now I’m HSV free.Thanks for saving me doc.
You’re so authentic and beautiful Dr Sunday,I recommend #DrOseghaleSundayHerbalHome medicine for y’all to cure hsv1/2 or any other diseases, thank you truly..