Disease, Disorders, Medical Disciplines

MYOSITIS SUPPORT AND UNDERSTANDING ASSOCIATION

Empowering the Myositis Community

Lincoln, DE

Mission

Our mission is to improve the lives and empower those fighting Myositis through education, support, awareness, advocacy, and access to research.

Notes from the Nonprofit

We are still a relatively new nonprofit organization. And, we represent a community of rare disease patients living with Inflammatory myopathies, myositis. We are currently undergoing strategic planning.

Ruling Year

2015

Founder and President

Mr Jerry Williams

Main Address

9125 N Old State Rd

Lincoln, DE 19960 USA

Keywords

myositis, polymyositis, dermatomyositis, inclusion body myositis, necrotizing myopathy, MCTD, orbital myositis, healthcare advocate, education, rare disease, fundraising, financial assistance

EIN

47-4570748

 Number

6348415439

Cause Area (NTEE Code)

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

Specifically Named Diseases (G80)

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

IRS Filing Requirement

This organization is required to file an IRS Form 990-N.

Social Media

Blog

Programs + Results

What we aim to solve New!

Add a problem overview to your profile.

Update now

Our programs

What are the organization's current programs, how do they measure success, and who do the programs serve?

SOURCE: Self-reported by organization

Support and Education Groups

Financial Assistance Program

Video Support and Educational Sessions

Clinical Trial Matching

Where we workNew!

Charting Impact

Five powerful questions that require reflection about what really matters - results.

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have and haven't they accomplished so far?

In the next year, our goals are focused on strategic planning and building additional relationships with other organizations and research partners. Part of our planning involves continuing to reach out to other organizations to form alliances in order to better educate and support myositis patients.

Plans also include the start an outreach program for physicians to better inform them of who we are, what we can provide, and how we can work together to benefit myositis patients.

We are currently forming our strategies in which we will use to make our goals a reality. It will involve volunteers to assist in important tasks, along with our working board of directors.

Through the use of our current affiliations with other organizations, we will be able to rely on them to help provide some of the necessary information in which we will need to accomplish our goals.

Our ability, through our Facebook support groups and our website's myositis network, to reach patients directly provides us with a huge advantage in gaining knowledge of what is needed, enlisting the help of patients directly, and in getting feedback about how we are doing. As an all patient and caregiver board of directors, we have direct experience with what life is like with myositis and are better able to determine the needs of the community.

There are many untapped resources and our ability to gain contact to those will also be an advantage in moving forward.

Through the use of technology and members who have advanced experience in the technology fields, we have ways of implementing programs and services that would otherwise be too expensive for a newer nonprofit organization.

Through Board Member self-assessments and an overall board assessment, we will be able to fairly determine our progress.

But more so, the members of our nonprofit organization and our ability to reach them directly can provide immediate feedback on our progress and ways we can improve. Through the use of tracking on various campaigns we are able to determine effectiveness and make necessary adjustments.

We have created the first ever Myositis Online Video Support, Activity, and Educational sessions for Myositis patients, caregivers, and the general public including our monthly video Laughter Yoga session. Our Financial Assistance Program helping patients with medical-related, medical-travel, and vital living expenses. We have created and nurtured our 3 online support groups with membership increasing. Worked together with prominent myositis researchers and clinicians to for patient surveys and education, along with forming our Medical Advisory committee. We have partnered with pharmaceutical companies for clinical trial matching and to assist in recruitment efforts. Next, and based on outcomes of strategic planning, our plans for the near future include: - Build upon and develop new relationships with pharmaceutical companies - Building upon our nonprofit brand and a strategic communications plan to better focus on providing for our members, supporters, and followers.

External Reviews

Financials

Need more info on this nonprofit?

Need more info on this nonprofit?

FREE: Gain immediate access to the following:

  • Address, phone, website and contact information

Operations

The people, governance practices, and partners that make the organization tick.

Need more info?

FREE: Gain immediate access to the following:

  • Address, phone, website and contact information

Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

BOARD ORIENTATION & EDUCATION

Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?

Yes

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?

Not Applicable

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?

Yes

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?

Yes

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?

Not Applicable

Organizational Demographics

In order to support nonprofits and gain valuable insight for the sector, GuideStar worked with D5—a five-year initiative to advance diversity, equity, and inclusion in philanthropy—in creating a questionnaire. This section is a voluntary questionnaire that empowers organizations to share information on the demographics of who works in and leads organizations. To protect the identity of individuals, we do not display sexual orientation or disability information for organizations with fewer than 15 staff. Any values displayed in this section are percentages of the total number of individuals in each category (e.g. 20% of all Board members for X organization are female).

SOURCE: Self-reported by organization

Gender

Race & Ethnicity

Sexual Orientation

We do not display sexual orientation information for organizations with fewer than 15 staff.

Disability

We do not display disability information for organizations with fewer than 15 staff.

Diversity Strategies

check_circle
We track retention of staff, board, and volunteers across demographic categories
close
We track income levels of staff, senior staff, and board across demographic categories
close
We track the age of staff, senior staff, and board
check_circle
We track the diversity of vendors (e.g., consultants, professional service firms)
close
We have a diversity committee in place
close
We have a diversity manager in place
close
We have a diversity plan
check_circle
We use other methods to support diversity