Overview
What is The Myositis Association?
The Myositis Association is a prominent nonprofit organization, headquartered in Columbia, Maryland. Its primary purpose is to support, educate, and advocate for individuals and families affected by myositis, a rare and challenging disease. The organization offers a network of peer-led support groups, both in-person and virtually, fostering communication and empathy among those with similar experiences. Affinity groups are also established to cater to specific communities and extend the organization's reach. TMA's initiatives aim to increase awareness of myositis, which can lead to earlier diagnoses and more effective treatments. Through educational events, media appearances, and legislative advocacy, the organization works to remove barriers to accessing quality myositis care. TMA provides resources and guidance through publications, newsletters, and online platforms, reaching approximately 23,000 members. In 2022, TMA expanded its virtual outreach, created additional affinity groups, and organized a national awareness campaign. The Myositis Association serves as a vital resource for the myositis community, which is estimated to include 75,000 Americans, offering support, education, and advocacy to help improve the lives of those affected by this rare disease.
Official website here: www.myositis.org
What are the reviews and ratings of this charity?
Charity Navigator Rating: 97%
The Myositis Association (TMA) has earned an impressive Four-Star out of Four Star rating from Charity Navigator, reflecting its strong commitment to accountability and transparency. With a 99% score in Accountability & Finance and a program expense ratio of 68.83%, TMA effectively directs a significant portion of its resources towards its mission. The organization is governed by a fully independent board, ensuring robust oversight and adherence to ethical standards.
User feedback highlights TMA's vital role in providing education and support for individuals and families affected by myositis, a group of rare diseases. Reviewers have praised the organization for its annual conferences, which serve as valuable platforms for patients to connect with medical experts and each other. Many individuals express gratitude for the comprehensive resources and networking opportunities TMA offers, citing personal stories of how the organization has positively impacted their lives.
However, some concerns have been raised regarding the financial management of the organization, specifically relating to executive salaries and perceived inefficiencies. A single review criticized the salary of the director, claiming it represents a significant portion of revenue and suggesting that funds may not be reaching those in need. Despite this, the overwhelming majority of feedback remains positive, with users valuing TMA's dedication to advancing research and providing essential support within the myositis community.
This AI summary has been generated from information found on Charity Navigator and Great Nonprofits.
Is The Myositis Association legitimate?
The Myositis Association is a legitimate nonprofit organization registered as a 501(c)(3) entity. The Myositis Association submitted a form 990, which is a tax form used by tax-exempt organizations in the U.S., indicating its operational transparency and adherence to regulatory requirements. Donations to this organization are tax deductible.
Heare are some key statistics you may want to consider:
Executive Compensation: $195,250
Professional Fundraising Fees: $0
Other Salaries and Wages: $313,809
For more financial information, click here
Official website here: www.myositis.org
What is the mission statement of The Myositis Association?
The Myositis Association serves as a significant resource, offering education and support to individuals and families affected by myositis, a rare disease marked by physical, psychological, and emotional challenges. With an estimated 75,000 Americans impacted, the association aims to improve understanding and diagnosis of the disease, which often presents symptoms such as muscle weakness, fatigue, and difficulty swallowing. Due to its rarity, myositis can be challenging to diagnose and research new treatments, but the association strives to bridge this gap by bringing together the medical and patient communities. In 2022, the association expanded its outreach through virtual programs, Affinity Groups, and a national awareness campaign, while also hosting an in-person International Annual Patient Conference for both virtual and in-person attendees.
Official website here: www.myositis.org
Who is the CEO of The Myositis Association?
David Mochel is the Chairman of The Myositis Association.
Official website here: www.myositis.org
What is the revenue of The Myositis Association?
The Myositis Association's revenue in 2022 was $1,317,262.
Official website here: www.myositis.org
Who are the executives of The Myositis Association and what are their salaries?
The average compensation at The Myositis Association during 2022 was $63,632. There are 8 employees and 46 volunteers at The Myositis Association.
Here are 17 key members and their salaries:
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Official website here: www.myositis.org
Where can I find the form 990 for The Myositis Association?
The Myositis Association's most recent form 990 was submitted in 2022 and can be accessed here.
Official website here: www.myositis.org
Learn more at the official website: www.myositis.org
Mission Statement of The Myositis Association
The Myositis Association, as the leading international organization, is dedicated to providing vital resources, education, and support to individuals and families affected by myositis. This community includes children, adults, and their loved ones who are coping with the challenging and life-altering physical, psychological, and emotional impacts of this rare disease. Currently, an estimated 75,000 Americans are living with myositis. Symptoms of this condition can vary widely and may include muscle weakness, pain, fatigue, tripping or falling, swallowing difficulties, breathing problems, skin irritations, joint pain, and eye irritations.
Given the rarity of myositis, many physicians may be unfamiliar with the disease and its symptoms. Additionally, enrolling enough patients to conduct comprehensive research on new treatments can be challenging. Furthermore, the medical community often lacks clear guidelines for effectively managing patients with myositis. Despite these challenges, The Myositis Association remains committed to addressing these issues and improving the lives of those affected by this condition. They strive to bring together the myositis patient and medical communities through initiatives like their annual International Patient Conference, which offers education, support, and a chance for both groups to connect. This organization's mission is to provide essential resources, advocate for increased awareness and research, and offer a supportive network for individuals and families living with myositis.
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Impact
July, 2024
The Myositis Association is making a significant impact by providing vital resources, education, and support to individuals and families in the myositis community. With an estimated 75,000 Americans affected by this rare disease, TMA's efforts are crucial in addressing the physical, psychological, and emotional challenges faced by those living with myositis.
Through a range of initiatives, including support groups, educational programming, and advocacy work, TMA is raising awareness about myositis and advocating for improved access to care and treatments. By facilitating communication and compassion through support groups and affinity groups, TMA is creating a supportive community for individuals with myositis.
Additionally, TMA's educational efforts, including publications, newsletters, online resources, and social media outreach, are helping to inform patients, care partners, and clinicians about myositis diseases. By increasing awareness and understanding of myositis, TMA is working towards earlier diagnosis, more effective treatments, and ultimately improving the quality of life for patients.
Overall, The Myositis Association's impact extends beyond individual patients to the broader myositis community, providing tools, guidance, and support to make a difference in the lives of those affected by this rare disease.
This information is meant to be a general summary of The Myositis Association. Please take the time to review official sources before making any decisions based upon the content provided here.
Financials
This financial information is from Propublica.
Other financial information:
This information is from the most recently submitted tax form from this organization, which was in 2022.
- Investment Income: -$183,061
- Program Service Revenue: $64,068
- Gross Receipts: $2,302,517
Assets and Liabilities:
- Total Assets: $2,327,942
- Total Liabilities: $574,535
- Net Assets: $1,753,407
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Programs
Programs are reported by nonprofits in their tax forms and are normally their tax-exempt activities.
Patient Conferences
Revenue
$64,068
Organization Details
Founding Year
1993
Phone
(800) 821-7356Principal Officer
David Mochel
Main Address
6950 Columbia Gateway Dr 370, Columbia, MD, 21046
Website
www.myositis.orgNTEE Category
Code: P82Z - Human services
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