PLATINUM2023

MILES FOR MIGRAINE

Creating community with patient-participatory events

Jericho , VT   |  www.milesformigraine.org

Mission

Improving the lives of migraine patients and their families, raising public awareness about headache disorders, and helping find a cure for migraine.

Notes from the nonprofit

About Us
Miles for Migraine is a registered 501(c)(3) non-profit with the mission of improving the lives of migraine patients and their families, and helping find a cure for migraine. We do this by holding live, patient-participatory events to encourage people to increase advocacy and thereby reduce stigma.

Miles for Migraine History
During a first-ever advocacy visit by the Alliance for Headache Disorders Advocacy to their respective members of Congress in September, 2007, a group of advocates, including AHS member and migraine patient Eileen Jones, RN, PHN, were given a challenge.
If they wanted to see an increase in NIH funding for migraine, they needed to build public support in their home cities, so Eileen decided to start a fun walk and competitive race.
We held our first 5K and 10K run and 2-Mile walk in 2008 in San Francisco's Golden Gate Park.

Our Vision
Our vision is to create some “big noise" in the community to raise the awareness of migraine and headache disorder as mor

Ruling year info

2008

Executive Director

Shirley Kessel

Main address

16 Cilley Hill Road

Jericho , VT 05465 USA

Show more contact info

EIN

01-0910791

NTEE code info

Neurology, Neuroscience (G96)

Alliance/Advocacy Organizations (G01)

Fund Raising and/or Fund Distribution (W12)

IRS filing requirement

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

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

People with migraine often do not have the chance to stand up for their disease, and thus themselves.  They desperately need an opportunity to do something positive about their condition.  It is basic psychology that by collaborating positively with a group, they feel better about themselves. Patients also need a way to encourage their families and friends to participate for migraine; doing something for someone else's disease transforms attitudes and provides them an opportunity to learn about the scope of migraine.

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?

Miles for Migraine Walks/Runs

We hold a 2 mile walk and 5 run in 25 cities. Our events create awareness about a highly stigmatized disease, and guide people on advocacy.

Population(s) Served
Adults
Caregivers

Statistics on the prevalence of migraine headaches in children and teens include (1) 
• 3 to 7% from 3 to 7 years of age 
• 4 to 11% from 7 to 11 years of age 
• As high as 23% from 11 to 15 years of age 

Migraine has a significant impact on the lives of children, often leading to frequent and long school absences, disrupted family life, difficulties with peer relationships and impaired ability to participate in extracurricular activities. (2) 

Though there are many effective treatments for migraine, it can take many months to bring this difficult neurologic condition under control, even under the care of eminently qualified headache specialists. In the meantime, the impact on the adolescent’s normal social, emotional and academic development is often very significant though often underappreciated and overlooked by the medical community. Migraine in adolescents has been associated with significant impairment in health-related quality of life compared to their peers.

Population(s) Served
Adolescents
Families

Migraine is much more than a headache. Because few realize that it’s a neurobiological disease, people with migraine may experience stigma and discrimination. You may feel isolated and shamed, as if no one understands. Our Migraine Community Groups bring together the people just like you to connect, discover and share. We provide helpful resources and supportive discussions to help you better navigate life with migraine.

Population(s) Served
Adults
People with disabilities

The day will be both informational and interactive. Our goal is for the person with migraine, cluster and other headache diseases to both learn and be supported. Topics will cover coping strategies, advocacy, reducing stigma, research, and medical advancements. There will be time to join with others in a supportive and safe community. Non-medical modalities will be presented in an experiential environment.

Population(s) Served
Adults
People with disabilities

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.

Total number of grants awarded

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

People with diseases and illnesses

Related Program

Miles for Migraine Walks/Runs

Type of Metric

Context - describing the issue we work on

Direction of Success

Holding steady

Context Notes

In 2022 we awarded $600,000 to multiple headache fellowship programs in the US. There is a doctor shortage and we help to support more programs to train more doctors. https://www.milesformigraine.org/

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.

In addition to pain, sickness, and -- for many -- daily disability, migraine carries a severe burden of discrimination and negativity from many members of community.History demonstrates that diseases that are stigmatized, like HIV, breast cancer, and autism, can only change in the public's mind when the patients and their families come together in community action asking for recognition.  Diseases in which the patients do not stand up for themselves remain badly stigmatized and patients do not receive the research or therapies needed to effectively treat their condition.  Migraine is a major disease that receives about 1/20th of the research dollars that should be given to it based upon its impact.  Patients desperately need new research to discover new treatments, and more headache researchers and clinical specialists need to be trained.

Miles for Migraine produces fun run events, typically 5k and 10k races and a 2- mile walk, to raise money for migraine research. in addition to our walk/runs, we hold adult education days, and also host youth camps for kids and teens who have migraine or other headache disorders.

Our events are live, and in person to demonstrate to patients how to increase awareness and advocacy, and to engage patients and caregivers to thrive in a like-minded community.


In 2023 we will hold 25 walk/run/relax events, education and social events, support groups, mindfulness programs, and advocacy training.

• Walks/Runs
• Education Days for Adults and Youth
• Advocacy:
o Alliance for Headache Disorders and Advocacy (AHDA) : http://allianceforheadacheadvocacy.org
o Coalition for Headache and Migraine Patients (CHAMP) : https://www.headachemigraine.org

We have donated $2,830,439 to Research, Patient Care, and Public Awareness

We have provided funding for hundreds of advocates to attend the annual “Headache on the Hill" trek to Capitol Hill.

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.

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

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

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

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, 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 tell the people who gave us feedback how we acted on their feedback

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, It is hard to come up with good questions to ask people, It is difficult to get honest feedback from the people we serve, It is difficult to identify actionable feedback

Financials

MILES FOR MIGRAINE
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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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lock

Connect with nonprofit leaders

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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

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

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

MILES FOR MIGRAINE

Board of directors
as of 10/20/2023
SOURCE: Self-reported by organization
Board chair

Dr. William Young

Eileen Jones

Ken Jones

William B Young

Vincent Rogusky

Kerry Knievel

Nina Riggins

Courtney Iser

Virginia Valenze

Michele Vargas

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? No
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • 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? No
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? No
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 1/20/2023
info Candid has made improvements to the race and ethnicity options.

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Gender identity
Female

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

No data