Press Releases: Myositis Support and Understanding Association, Inc.
Myositis Support and Understanding Association Turns Two and wishes for Myositis patients to Celebrate their Caregivers
LINCOLN, DE, UNITED STATES, August 1, 2017 — MSU is a 501(c)(3) non-profit organization founded on July 30, 2015, for patients living with, and for loved ones caring for someone with, Myositis, a rare and debilitating autoimmune disease. Myositis is a rare disease estimated to affect between only 50,000-75,000 people in the United States.
In recognition of everything Myositis Caregivers provide, MSU is asking patients to “Celebrate their Caregivers” and share the experience through videos, photographs, and articles to be distributed on the Myositis Support and Understanding website and social networking sites.
“Myositis is an opportunity for us to be aware and intentional every day with our loved ones, a constant reminder to reflect and be grateful for the abilities we have and the people we love.” Rick Boling, a family member of a myositis patient and co-caregiver with the rest of the family.
Due to the nature of the Idiopathic Inflammatory Myopathies, patients often experience debilitating muscle weakness, fatigue, chronic pain, uncomfortable to painful skin rashes, trouble swallowing, lung disease, as well as other organ involvement. In some cases, especially with Inclusion Body Myositis (IBM) and refractory cases or advanced forms of polymyositis, dermatomyositis, or necrotizing autoimmune myopathy, full disability can occur in which patients require full assistance with activities of daily living, known as ADL’s. When patients progress to this level of disability caregivers become a necessity for patients to function.
May is Myositis Awareness Month. Myositis Support and Understanding commemorates the month with patient-centered events
LINCOLN, DE, UNITED STATES, April 28, 2017 — Myositis Support and UnderstandingAssociation, a 501(c)3 nonprofit organization, commemorates Myositis Awareness month with our 2017 Theme, “With Myositis, Sometimes Zebras have Spots.” The zebra is the well-recognized symbol of rare diseases. Myositis, a rare disease without a cure, is often hard to diagnose, taking years for a proper diagnosis, and even more difficult to treat, due to differences in disease markers, overlap symptoms, side effects from medications, etc. MSU has decided to use 2017’s May month of awareness to teach about how the experiences and symptoms of this rare disease are different, even among the patients with the same disease. Doctors are now starting to be trained when you hear hoof beats, look for zebras (rarities), instead of horses (common ailments), when in the past, they only looked for horses (the most common ailments). Through our public education and support of our members, plus our financial assistance program, MSU helps patients deal with the spots of the zebra called Myositis.
Myositis Support and Understanding Association (MSU) Supports and Partners with Rare Disease Day® 2017
LINCOLN, DE, UNITED STATES, February 21, 2017 — Myositis Support and Understanding Association (MSU) has joined forces with 30 million Americans and health care advocates around the world for Rare Disease Day® on February 28, 2017. Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges people face.
Myositis Support and Understanding Association (MSU) is an all volunteer-managed 501(c)(3) non-profit organization that was founded by myositis patients for myositis patients. We work year-round to provide awareness, advocacy, education, support, and programs and services, such as our financial assistance program, to those affected by this rare disease only affecting an estimated 50,000-75,000 people in the United States.
Myositis Support and Understanding is asking for you to “Give to Give Back” for #GivingTuesday 2016
Lincoln, DE – November 25, 2016 – Myositis Support and Understanding is hosting a fundraiser and requesting volunteers for #GivingTuesday, a global giving movement that has been driven by individuals, families, organizations, businesses and communities in all 50 states and in countries around the world. Since its founding in 2012, millions of people have come together to support and champion the causes they believe in and the communities in which they live.
This year MSU is asking for donations of any amount to help continue moving forward as a relatively new nonprofit organization. We require continued funding in order to serve our members with financial assistance, program development, and continued operations. With Myositis being a rare disease, funding can be difficult outside of our membership. There are several ways you can make a contribution to help MSU. Visit SupportMyositis.org/donate to learn more and visit our Facebook Fundraiser, https://www.facebook.com/donate/10154698595627210/, and share with others.
Myositis Support and Understanding Association, Inc. launches its long-awaited Myositis Patient Financial Assistance Program in celebration of its one-year anniversary as a non-profit.
Lincoln, DE – July 14, 2016 – Myositis Support and Understanding Association, Inc. (MSU) launches its long-awaited Myositis Patient Financial Assistance Program in celebration of its one-year anniversary as a non-profit. MSU, a 501(c)(3) non-profit organization founded on July 30, 2015 for patients dealing with Myositis, a rare and debilitating neuromuscular disease, affecting an estimated 50,000-75,000 people in the United States. This program adds to the ever-growing list of services MSU offers to patients to provide day-to-day support to help patients cope with Myositis.
Myositis Support and Understanding Association celebrates Myositis Awareness month with #MyositisLIFE-themed activities
Lincoln, DE – May 1, 2016 – What is your #MyositisLIFE? May is Myositis Awareness Month. Myositis Support and Understanding Association (MSU) believes in Knowledge in Action! We want to show the world that Myositis patients have many different faces and lives. We are not defined by Myositis; it is just something we have. We are doctors, lawyers, accountants, teachers, nurses, artists, writers, singers, parents, grandparents, aunts, uncles, brothers, sisters, friends, animal-lovers, gardeners, travel-enthusiasts, and more.
To celebrate and raise awareness, MSU has scheduled many activities to promote awareness and to educate. For a full listing, please visit the Awareness page on our website,www.UnderstandingMyositis.org/awareness.
Myositis Support and Understanding Association announces its new Video Chat Support Program
Lincoln, DE — February 26, 2016 — With Myositis patients spanning across the globe, Myositis Support and Understanding Association is excited to bring their new Video Chat Program to light.
MSU created this new venture in an effort to expand its online support programs while bringing patients together from around the world. The Video Chat Program will enable patients and caregivers to meet face-to-face, discuss important topics, receive/give support and education about Myositis, and to learn new hobbies.
MSU originally began when Jerry Williams started a small Facebook support group in 2010 called “Polymyowhat: Understanding Myositis.” From this one, small, Myositis support group, MSU has expanded its reach as a patient-centered nonprofit with a specialty in caring for and supporting patients, members, and their caregivers.
Myositis Support and Understanding Joins Rare Disease Day® and
the Global Movement to Raise Important Awareness for Rare Diseases
Lincoln, DE—February 22, 2016 — For the third year in a row, Myositis Support and Understanding Association (MSU) has joined forces with rare disease patients and healthcare advocates in the United States and around the world for Rare Disease Day® held on February 29, 2016. Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients and the community.
This year’s Rare Disease Day theme, “Patient Voice,” is in line with what MSU does every day to give patients with Myositis a voice by:
- Providing various avenues of support which allow MSU members and Myositis patients to help each other, support each other, brainstorm ideas, ask important questions to hear the experiences of others, find their voice in talking with other patients living with the same disease, and, hopefully, to their family members.
- Supplying patients and caregivers with information to educate themselves and with materials that they can take to doctors who are not familiar with Myositis; helping them to best advocate for themselves to get better care.
Myositis Support and Understanding Association, Inc. Gains 501(c)(3) Nonprofit Status
Lincoln, DE—September 8, 2015—Myositis Support and Understanding (MSU)
Myositis Support and Understanding Association (MSU) announced today that they have received approval from the IRS and are now a registered 501(c)(3) nonprofit organization.
“Becoming a nonprofit organization has been a dream of mine since 2010 and now that it is real, we can begin to serve our Mission to help support and educate Myositis patients, caregivers, and healthcare providers, and soon provide financial assistance to patients in need,” says Jerry Williams, Founder and President of MSU.
Myositis Support and Understanding Supports Rare Disease Day® and Joins Global Movement to Raise Important Awareness for Rare Diseases
Lincoln, DE—February 27, 2015—Myositis Support and Understanding (MSU) has joined forces with rare disease patients and health care advocates in the U.S. and around the world for Rare Disease Day® on February 28. Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients and the community.
This year’s Rare Disease Day slogan, “Day-by-day, hand-in-hand,” truly sets up our mission at MSU which is to improve the lives of Myositis patients through self-advocacy programs, need-based financial assistance for medical-related expenses and to provide education and support for patients, caregivers, healthcare providers and the general public about Myositis. We will foster direct involvement with other Myositis organizations to help promote treatment innovation and research with our collective eyes on a cure and provide financial support to organizations that share similar visions.