MS Cure Fund, Inc.

Strength for Today - Hope for Tomorrow

Weston, MA   |  http://mscurefund.org
This organization has not appeared on the IRS Business Master File in a number of months. It may have merged with another organization or ceased operations.
This organization's exempt status was automatically revoked by the IRS for failure to file a Form 990, 990-EZ, 990-N, or 990-PF for 3 consecutive years. Further investigation and due diligence are warranted.

Mission

MS CURE FUND is a national nonprofit organization dedicated to:
1. Increasing awareness and understanding of Multiple Sclerosis and its debilitating symptoms
2. Providing help and information to newly diagnosed patients
3. Conducting educational programs & seminars for patients, along with MS neurologist led forums for support & case discussion
4. Raising much needed funds going directly to the scientists and clinicians researching a cure for MS.
MS Cure Fund was founded in 2005 by an MS patient who experienced difficulty accessing support for newly diagnosed MS patients within her local community and committed to making a difference for others.

Ruling year info

2006

Founder

Mrs. Susan A Strachan

Chief Operating Officer, Director of Patient Advocacy

Mr. Jack B Cowie III

Main address

588 Boston Post Road Suite 308

Weston, MA 02493 USA

Show more contact info

EIN

36-4562602

NTEE code info

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

Alliance/Advocacy Organizations (H01)

Fund Raising and/or Fund Distribution (N12)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

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

New & Emerging Therapies in MS Treatment

Noted MS Neurologists will present the latest disease modifying therapies (DMT's) available for people living with MS. The events take place in private dining rooms with 25 - 40 MS patients and caregivers hearing directly from MS specialists. Ordinarily doctors have only 15 - 20 minutes to sit with their patients every six months. This program provides two hours of uninterrupted communication directly to patients without having to focus on one DMT or pharmaceutical company over another. Patients find this a far more balanced and unbiased as well as far more informative than pharmaceutical branded patient talks.

Population(s) Served
Adults

MS Cure Fund ran the east coast's first MS Adaptive Ski Day at Sunday River Resort in Newry, Maine. MS Cure Fund collaborated with Maine Adaptive Sports & Recreation to provide free lift tickets, adaptive ski equipment, ski clothing, and trained adaptive ski guides for each participating MS patient.

Population(s) Served
Adults

An educational program for people living with MS. It educates them as to the warning signs of MS disease activity and how and when to speak to their MS healthcare provider.

Population(s) Served
Adults

An MS patient education program to educate women living with MS as to how to live their BEST life by taking care of themselves and their health with primary care and breast exams and colonoscopies, PAP tests, etcetera.

Population(s) Served
Adults

An MS patient education program that educates people living with MS on how to advocate for their best possible care and health insurance coverage.

Population(s) Served
Adults

A Patient Education Program for People Living with Secondary and Primary Multiple Sclerosis
Effective relapse management and rehabilitation are critical factors affecting the quality of life and ultimate disease outcome for people living with more aggressive forms of multiple sclerosis (SPMS & PPMS). Education for people living with SPMS & PPMS, and their caregivers, will allow them to accurately identify disease activity, and what steps should be taken to prevent a relapse from becoming a permanent disability.

Population(s) Served
People with diseases and illnesses
Caregivers

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of women counseled about Pap tests

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults, People with diseases and illnesses

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

These are the number of women who attended live patient education programs by year. All of these attendees were taught the critical importance of good nutrition, meditation, exercise and rest..

Number of people reporting that their health provider always listened carefully to them

This metric is no longer tracked.
Totals By Year
Population(s) Served

Women and girls, Men and boys, Adults

Related Program

New & Emerging Therapies in MS Treatment

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Holding steady

Context Notes

MS Cure Fund conducts live patient education programs for people living with MS. We have consistently increased the number of programs we have done each year.

Number of clients who report adequate participation in their own treatment

This metric is no longer tracked.
Totals By Year
Population(s) Served

Women and girls, Men and boys, Adults

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Holding steady

Context Notes

On average, 65% of attendees at our live patient education programs report adequate participation in their own treatment. That is one of the primary reasons they attend, to learn how to participate.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

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

The goals of MS Cure Fund are to:
1. Increase awareness and understanding of Multiple Sclerosis and its debilitating symptoms
2. Provide help and information to newly diagnosed patients
3. Conduct educational programs & seminars for patients, along with MS neurologist led forums for support & case discussion
4. Raise much needed funds going directly to the scientists and clinicians researching a cure for MS.
5. Establish a "Women's Health Clinic" within every MS Treatment Center in the United States.

MS Cure Fund will employ the following strategies to reach its goals:
1. Continuously solicit input from, and collaborate with, world leading MS clinicians and researchers to remain current and accurate in all patient
2. Work cooperatively with the pharmaceutical and biotech communities to find common purpose to fund the education of MS patients, caregivers and healthcare providers. This cooperation will take the form of program sponsorships and marketing partnership opportunities.
2. Apply for unrestricted educational grants to support patient and healthcare provider education. Disease Modifying Therapies (DMT's) for the treatment of MS are evolving at an ever increasing rate. Biomarker recognition and other diagnostic discoveries are being developed at an equal rate. Strategic planning of topical subject matter for the education of all persons involved with MS is critical to meet the needs of the MS community.
3. Develop dynamic, purpose driven campaigns to engage significant charitable donation support of research to eradicate MS and its symptoms.
4. Develop dynamic, purpose driven campaigns to engage significant charitable donation support of women focussed health clinics to service the 72% of MS patients that are female.

MS Cure Fund has received (Fall 2014 for calendar year 2015 implementation) a 300% increase in unrestricted educational grant funding and sponsorship funding of patient education programs to expand its delivery of current, topical presentations by noted MS focussed neurologists to patient audiences on a national basis. This support has provided MS Cure Fund with the financial backing to hire the necessary staff to execute these programs effectively. In development of its national programming, Ms Cure Fund has recruited an exceptional Medical Advisory Panel, comprised of global leaders in MS treatment and research. MS Cure Fund has also added senior staff with world class experience in major event planning and execution. MS Cure Fund will continue to work with its pharmaceutical partners to draw on the considerable in-market expertise of their field marketing representatives as we continue to growth.

In the ten years since receiving its letter of determination from the internal Revenue Service in 2004, MS Cure Fund has made steady progress in meeting the needs of MS patients on first a local, then regional basis. It is only through tireless dedication to the patient community of those living with MS that the exponential growth being currently experienced is possible. MS Cure Fund has already secured funding for two additional national patient education programs for 2016. While our progress is tremendous, MS Cure Fund is making every effort to maintain the highest standards in delivering patient education by continuously consulting with our world renowned Medical Advisory Panel.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    People living with Multiple Sclerosis, their caregivers, family members, and friends.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Constituent (client or resident, etc.) advisory committees, Suggestion box/email,

  • How is your organization using feedback from the people you serve?

    To identify bright spots and enhance positive service experiences, To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    We improved the the legibility of our education presentations to help people with optic neuritis see the presentation screens.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders,

  • Which of the following feedback practices does your organization routinely carry out?

    We aim to collect feedback from as many people we serve as possible, We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We ask the people who gave us feedback how well they think we responded,

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

Financials

MS Cure Fund, Inc.
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Operations

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

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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MS Cure Fund, Inc.

Board of directors
as of 7/1/2021
SOURCE: Self-reported by organization
Board chair

Mrs. Susan Strachan

MS Cure Fund, Inc.

Term: 2004 - 2018

Tanuja Chitnis, MD

Partner's MS Center, Boston, MA

Donna DePrisco

Susan Strachan

Roger Komins

Coldwell Banker Residential Brokerage

William Stewart

Retired

Yonghao Cao, PhD

AbbVie Pharmaceutical Research & Development

Jack Cowie III, NPhD

Arete Discoveries, Inc.

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and 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 ? Yes
  • Ethics and 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? Yes

Organizational demographics

SOURCE: Self-reported; last updated 08/05/2019

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person with a disability

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person with a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

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

Equity strategies

Last updated: 08/05/2019

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
Policies and processes
  • We have community representation at the board level, either on the board itself or through a community advisory board.