Disease, Disorders, Medical Disciplines

KENTUCKIANA FIBROMYALGIA SUPPORT GROUP

New Albany, IN   |  www.kentuckianafm.org

Mission

Mission Statement
The Kentuckiana Fibromyalgia Support Group offers extensive education and support to patients and caregivers while advocating for proper healthcare, research and education of Central Sensitivity Syndrome, fibromyalgia and chronic pain illnesses. As Leaders within our community, we strive to share the latest research and offer support to encourage our community to have a voice and a choice on their healthcare.

Vision Statement
Educate the public and healthcare community by promoting appropriate diagnosis, drive scientific research for a cure, end the stigma of chronic pain and the devastation it has on lives and our nation.

Ruling year info

2014

Founder, Treasurer, Organizer

Sabrina Numann

Main address

1012 Meadowview Dr

New Albany, IN 47150 USA

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EIN

45-2426970

Cause area (NTEE code) info

Nerve, Muscle and Bone Diseases (G50)

Fund Raising and/or Fund Distribution (W12)

Public, Society Benefit - Multipurpose and Other N.E.C. (W99)

IRS filing requirement

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

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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?

Family & Friends Day

Aimed to educate caregivers and help them understand the realities of central sensitization syndrome and it's comorbid conditions. Offer solutions to manage their daily lives while caring with a disabled person.

Population(s) Served
Disabled, General or Disability Unspecified
Physically Disabled nec
Mentally/Emotionally Disabled
Budget
$0

The Kentuckiana Fibromyalgia Support Group offers a community service program aimed at children and adolescents to offer volunteerism on a short-term basis. Our events are generally small-staffed and require volunteers for our events. This short-term community service idea is ideal for teens who are unable to commit long-term but still have a desire to help. Our fundraising programs include: assisting with setup and teardown of tents, tables and signs, answer questions to the public, being available for staff and vendors cleanup and assisting in the children's game booth.

Population(s) Served
Physically Disabled nec
Disabled, General or Disability Unspecified
Other Named Groups
Budget
$200

Celebrating bringing family and friends together, who lives with or know someone who lives with chronic pain illnesses, in a picnic setting. This fundraising program donates a % of proceeds to research on fibromyalgia pain.

Population(s) Served
Disabled, General or Disability Unspecified
Physically Disabled nec
Budget
$3,000

The National Fibromyalgia & Chronic Pain Association is joining forces with local organizations and passionate Leaders Against Pain to launch TOGETHER WALKS in 2016 in Richmond, Portland, Louisville, Coral Springs, Central Florida, Nashville, and a Virtual Online Walk.
These event play a critical role to raise awareness about fibromyalgia pain and fund research into the disorder that will lead to better treatments. Together Walks is a action-oriented, fun and healthy community event, uniting the public, patients and their family, friends, associates and neighbors to end the stigma of this chronic pain disease.

Population(s) Served
Disabled, General or Disability Unspecified
Physically Disabled nec
Budget
$3500

Where we work

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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 coalition meetings held and attendance

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

People with disabilities

Context Notes

Sabrina Numann is the Director of Leaders Against Pain Action Network, an advocacy program of the National Fibromyalgia & Chronic Pain Association.

Number of participants engaged in programs

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

People with diseases and illnesses

Related Program

Purple People Community Service Program

Context Notes

Includes community service program, Purple People, as well as support group volunteers.

Number of volunteers

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

People with disabilities

Related Program

Purple People Community Service Program

Context Notes

Purple People community service program. 2012 was a health fair with no volunteer program involved.

Number of public events held to further mission

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

People with disabilities

Context Notes

2009, 2010, 2011, 2013, 2015: Awareness Day picnics. 2012: Health Fair. 2014: Awareness Day picnic plus Comedy Fundraiser

Average number of dollars received per donor

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

People with disabilities

Context Notes

Quickbooks reporting summary, average

Charting impact

SOURCE: Self-reported by organization

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

What is the organization aiming to accomplish?

Educate the public and healthcare community by promoting appropriate diagnosis, drive scientific research for a cure, end the stigma of chronic pain and the devastation it has on lives and our nation.

Offer extensive education and support to patients and caregivers while advocating for proper healthcare, research and education of fibromyalgia and chronic pain illnesses. As Leaders within our community, we strive to share the latest research, working with national organizations with a common goal and offer support to encourage our community to have a voice and a choice on their healthcare. Our Leaders assist in other nonprofit organizations and are trained in advocacy, facilitation and media. Our Advocate Directors stay current on all legislative issues directly affecting chronic pain patients and ensure our members and the public have the tools they need to have a voice in the decision made by their Representatives.

Our founder was diagnosed with chronic pain medical conditions and has first hand knowledge of its complexity. She is the Associate Director and national Events Coordinator for the Leaders Against Pain Action Network, a program of the National Fibromyalgia & Chronic Pain Association. She also worked as a certified nursing assistant, certified in medical terminology, a qualified tax preparer, has an Associate Degree in Information Technology & Networking, qualified and experienced in medical research, qualified Program Management, certified Microsoft Office and both the Founder and President have additional training in advocacy work within the Leaders Against Pain Action Network. Our Board of Directors are both diagnosed with chronic pain illnesses or are caregivers of someone disabled. They are extensively trained in Accounting and HR Management.

Dedication to our mission and vision for quality care has driven this team to four years of extensive training and work to become a recognized 501(c)3 nonprofit organization. Since then they have continued to strive to become a nationally recognized effort of education, support, awareness and advocacy on Central Sensitization Syndrome, Fibromyalgia and Chronic Pain.

Their efforts paid off with a story in the Courier Journal, multiple live television interviews, recognition as a Husband/Wife team in a nonprofit organization by the National Fibromyalgia & Chronic Pain Association and are direct communication with their legislators on current events. Their member base is over 500 people with continuous support meetings every month for over six years without a single missed meeting. They are recognized by corporate sponsorship with full support throughout the greater Louisville area for their efforts.

Financials

KENTUCKIANA FIBROMYALGIA SUPPORT GROUP
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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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KENTUCKIANA FIBROMYALGIA SUPPORT GROUP

Board of directors
as of 4/26/2017
SOURCE: Self-reported by organization
Board co-chair

Mr. John Numann

Kentuckiana Fibromyalgia Support Group, Inc

Term: Feb 2009 -


Board co-chair

Mr. Richard French

Kentuckiana Fibromyalgia Support Group, Inc

Term: Feb 2009 -

Sabrina Numann Treasurer

Kentuckiana Fibromyalgia Support Group, Inc

Natalie Brinkley Secretary

Ruth Linn Consultant

Winn Minium Administration

Dennis Brinkley Program Manager

Walter Nave Program Assistant

Kim Miller Advocacy Director

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? No

Keywords

Louisville, Kentucky, Indiana, fibromyalgia, chronic pain, central sensitization syndrome