Welcoem to posts!!
in the future - u will be able to do some more stuff here,,,!! like pat catgirl- i mean um yeah... for now u can only see others's posts :c
New Episode of The Three Myositis Musketeers MSU News for August 2024 is out. Find out what is happening now and watch this months episode! https://youtu.be/2wpuuPS8dWw?si=6kSJo...
4 - 0
Join us NOW to hear about Felicia Moore's journey and how pulmonary rehab has impacted her tremendously. #myositis @MyositisAssociation @myolife26583 @m
1 - 0
Premiering on Oct 28th, watch the full discussion that highlights Felicia's story of her myositis diagnosis and progression, her challenges and barriers, and the impact pulmonary rehab had on her symptoms, exercise tolerance, and quality of life. Join us right here on YouTube and interact live in the comments! We like to have these discussions with a patient and a provider to get as much education and information as possible.
0 - 0
Tomorrow, Oct. 8th is the 4th Annual Myositis Empower Walk!
Join us either in person at Discovery Park in Henderson, NV or through an upgraded interactive live stream on MSU's Facebook and YouTube. During the livestream of the walk, you'll be able to engage with our host from last year, Shelby De Jesus and hear from many inspiring individuals making a difference for the myositis community.
In this video, we give you a sneak peak of our discussion with model and myositis warrior Karen Alexander. During the live stream, you will hear much more about her myositis journey. You won't want to miss it!
The Interactive Livestream Begins on YouTube & Facebook tomorrow, Oct.8th, at 2 PM ET / 1 CT / 12 MT / 11 AM PT.
🎸 Learn more at myositisempowerwalk.org/
💙 Make a Donation at give.understandingmyositis.org/give/415164/#!/dona…
We appreciate your support of this community-building, positive, fun event created by Lauren and Jenna Landman in loving memory of the dad Robert "Bob" Landman who passed away due to complications of dermatomyositis. They have "turned their storm into a rainbow" and they are a part of our family, fighting for and with us.
0 - 0
It's time to fundraise for the 4th Annual Myositis Empower Walk, either a personal page or a team campaign!
In this video, we show how to create your campaign, how to personalize it, where to find other helpful resources, how to post updates and thank your donors.
We appreciate your generous support. We can reach our goal of $35,000 this year.
Get started with your campaign or donation at give.understandingmyositis.org/campaign/4th-annual…
And, visit MyositisEmpowerWalk.org/ for even more about the walk!
4th Annual Myositis Empower Walk is held in person at Discovery Park in Vegas, and via interactive live stream on Oct. 8, 2022. Join us for a day of positivity, community-building, and yes, fundraising. Thank you! 💙
2 - 0
Will you participate in the COVID-19 Vaccination in Autoimmune Disease (CoVAD)-2 Study?
Visit www.surveymonkey.com/r/957YL3B
Many countries are actively vaccinating their population against COVID-19 infection after large clinical trials showed the effectiveness and safety of the vaccine. However, the data on long-term effects and safety of the vaccine in patients with autoimmune disease is lacking.
This is put together by a group of doctors and scientists who want to study the effects of the COVID-19 vaccine in patients with autoimmune diseases in comparison to healthy individuals. Therefore, we request both individuals with autoimmune disease as well as those without any diagnosed autoimmune disease to take this survey. We invite eligible respondents to take this short survey irrespective of their vaccination status.
We encourage you to participate!
1 - 0
Did you miss it? Watch here!
1 - 0
5 Mental Health Touchpoints for Living Well - In 2020, shortly after COVID-19 hit, Babette Reeves, MA, MSW, LCSW, Behavioral Medicine Specialist (who is also living with dermatomyositis), joined us to share tools for caring for ourselves in ways that are protective, healing, and even strengthening despite the threats around us.
👉 Get the slideshow, and find helpful resources at understandingmyositis.org/5-mental-health-touchpoi…
While we can feel helpless against something we can’t run away from or fight directly, there are ways we can turn down our body’s automatic responses, decrease our stress, and improve our resilience. #myositis #mentalhealth
0 - 0
Have you seen the NEW IndeeLift HFL-400-FTS? It lifts up to 30", basically standing height. This was developed due to patients living with Inclusion Body Myositis reaching out to Indeelift about the original model that lifted to a seated position. Steve Powell, CEO of IndeeLift listened and put a plan into action to make a life-changing machine that can help you get up safely from the floor, either on your own with the remote control, or with assistance. But that's not all the new IndeeLift can do. As Jerry King demonstrates, and in another video, Kevin Dooley does as well, it can be used to transfer to bed, wheelchair, and commode. And for those with less weakness and more stability, to reach things in high places.
"I don't think there would be a day I wouldn't use the new IndeeLift," says Jerry Williams, Founder and President of Myositis Support and Understanding (MSU) who is living with refractory dermatomyositis and has mobility challenges.
MSU and IndeeLift have partnered to provide you with a special discount for members. And, don't let cost deter you. Financial assistance will be made available. See the full details to add your name to the list at understandingmyositis.org/indeelift/
Thank you @IBMyositis for being a trial participant for IndeeLift and for providing your helpful feedback to make it the best machine out there! And, for making this video showing the new model and how to set it up.
IndeeLift is a corporate sponsor of MSU and a sponsor of the 3rd Annual Myositis Empower Walk, and myositis is the focus for the next 5 years for all of IndeeLift's corporate philanthropic efforts. Thank you, IndeeLift!
0 - 0
💙 “This walk is for you!”
A short clip from Lauren and Jenna Landman, creators of the Myositis Empower Walk in loving memory of their dad, Robert "Bob" Landman.
See more by joining for the Watch Party of the 3rd Annual Myositis Empower Walk on Zoom - Sat. Oct. 23rd starting at 3 PM ET / 2 CT / 1 MT / 12 PT.
Get the info to join us at understandingmyositis.org/event/watch-party-myosit…
Invite your family and friends to join us, too! Follow the walk on Instagram, @myositisempower!
If you are able, please contribute. We are less than $2K away from reaching our goal. Don’t discredit the power of $5 and $10 donations. They do make a difference!
Text EMPOWERWALK to 44-321 or visit myositisempowerwalk.org/donate We appreciate your generosity.
0 - 0
Myositis Support and Understanding Association (MSU) is a patient-centered, all-volunteer 501(c)(3) nonprofit organization founded by myositis patients, for myositis patients and caregivers.
MSU is instrumental in helping to improve the day-to-day lives of patients impacted by the group of rare, complicated, autoimmune muscle, skin, and multi-organ diseases, the idiopathic inflammatory myopathies, generally referred to as myositis.
In this effort, we place a large focus on patient and caregiver support, offering live online video support and education sessions and various educational and compassionate support groups. We offer more than support, including education, patient financial assistance, access to research and clinical trials, advocacy, and more. Register for your free MSU membership and join us to make a difference in the myositis community.
Visit Understandingmyositis.org to learn more.