Disease, Disorders, Medical Disciplines

FOD Family Support Group

  • Okemos, MI
  • www.fodsupport.org

Mission Statement

Our mission is clear...to connect and network with FOD Families and Professionals around the world and to provide emotional and grief support, Family Stories, practical information about living with these disorders, and Medical Updates to inform families of new developments in screening, diagnosis, research and treatment. We also raise funds for upcoming Conferences, the training of new FOD Professionals, and for future FOD research.

Main Programs

  1. Family Support and Networking
  2. FOD/OAA International Metabolic Conference
  3. Grief Support

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Service Areas

Self-reported

International

The FOD Group is based in the US but we provide support via email/phone/website/Email List/facebook all over the world. Deb also offers local pro-bono one-on-one grief consultations for bereaved parents living with the death of a child of any age and from any cause in the Lansing, MI area by appointment only. Other losses (spouse/partner, parent etc) are supported as well. We also raise funds for future  training of new metabolic professionals and for future FOD research.

ruling year

2007

Principal Officer since 2007

Self-reported

Deb Lee Gould, MEd

Keywords

Self-reported

awareness, newborn screening,research,clinical training

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Also Known As

FOD Group

EIN

83-0471342

 Number

6185383778

Contact

Cause Area (NTEE Code)

Single Organization Support (G11)

IRS Filing Requirement

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

Programs + Results

How does this organization make a difference?

Overview

Self-reported by organization

The FOD Family Support Group is an all-Volunteer international Support Group for Families living with the rare metabolic disorders called Fatty Oxidation Disorders. We have offered online/phone emotional, grief and practical support and networking since 1991 and now have 3500+ Families from all over the world.

We offer support and Family networking via facebook/google groups/phone and skype calls, a National Metabolic Conference every 2 years in the US, an online Newsletter twice a year and an invaluable website of practical and research/medical information for laypersons and professionals. Additionally, as a community outreach, face-to-face probono Grief Support is offered to adults in the local Michigan area, as well as to others via phone or skype, for the death of a child, parent, spouse etc from any cause, not just from genetic metabolic disorders.

We also raise funds for future training of metabolic professionals and for FOD research, as well as for our Conferences and Grief Support services. If funding is available, we offer Family scholarships to help them attend our National Conference.

This vital support and networking empowers our Families to learn more about their disorder so they can best help themselves and/or their children to stay healthy and active throughout their lives. They learn they are NOT alone in their challenges and that 'We are All in This Together!'

Programs

Self-reported by organization

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

Program 1

Family Support and Networking

We provide support via online and by phone/skype, as well as at our Conferences. Refer to our Impact statement and Mission for more info.

Category

None

Population(s) Served

None

None

None

Budget

Program 2

FOD/OAA International Metabolic Conference

The FOD/OAA International Metabolic Conference is for parents, family members, affected individuals, professionals and exhibitors that have an interest in Metabolic Disorders. The importance of our Family Conference is to allow our members to meet other parents and professionals and learn more about their own or their child’s rare metabolic disorder. The focus for this conference is for Families to learn more about the medical management, nutrition and the social needs of caring for yourself or a child with a chronic disorder, specifically those with rare metabolic disorders.

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Budget

$50,000

Program 3

Grief Support

Deb Lee Gould, MEd, is a bereaved parent since 1985 and a Grief Consultant in Okemos, MI.

As a community outreach, she offers pro bono one-on-one grief support to parents and other adult family members and friends living with the death of a child of any age and from any cause. Most of Deb's work is with bereaved parents, but she does offer support for other types of loss, such as the death or impending death of a
spouse/partner, parent, sibling, friend, or other loved ones.

Deb received her Masters in Counseling in 1993 with specialized training in Grief Counseling.

She is also Co-Founder [1991] and Director of a 501c3 nonprofit and international all volunteer Family Support Group for rare metabolic disorders and has offered grief support to parents and others for over 25 years.

Category

Population(s) Served

Adults

General Public/Unspecified

Budget

$7000

Charting Impact

Self-reported by organization

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

  1. What is the organization aiming to accomplish?
    To be an international support and networking resource for Families living with a Fatty Oxidation Disorder and for Professionals interested in FODs and those clinically treating our Families.

    To provide practical and medical educational and research information (articles etc from our experts) to help Families learn about FODs and to assist them in the care of their own or child's disorder.

    To offer the opportunity to attend our National Metabolic Conference every 2 years, in conjunction with the Organic Acidemia Association.

    To offer probono Grief Support services via face-to-face or by phone/skype to FOD Families, as well as for the local community for any loss due to a death.

    To provide an online Newsletter twice a year, as well as online forums via facebook and google groups, so our affected Families can feel supported and empowered by others facing similar challenges.

    To help raise funds for future FOD Research and for the clinical training of new metabolic professionals.
  2. What are the organization's key strategies for making this happen?
    Because of costs, we do almost all of our networking and support Online - facebook, google groups, skype, Newsletter etc.
    Families also try to get together on their own in their local areas.
    The only time we are all together (@ 250 Families attend) with medical professionals is when we have our Conferences.
  3. What are the organization's capabilities for doing this?
    Despite being a small Group, we have been able to raise enough funds over the years via our FOD Awareness items and family/professional donations, that we have been able to put on a National Conference every 2 years since 2000. Our funds also pay for our website maintenance and a local Grief Support office. We utilize @ 5 volunteers for the website, updating the Family networking listing, and for Conference planning. Deb is also trained a Grief Counselor and is able to offer free support services, but donations are accepted.
  4. How will they know if they are making progress?
    Our Group is growing by @ 250 new Families per year based on our 'Join our Group' form - every new Family (or medical professional) that wishes to participate in our online forums must fill out the form. Every year that we offer our National Conference, we attract at least 100 FOD Families and some professionals and we had our largest number of FOD participants in 2012 with @125. We also had @25-30 professionals. Our Families also educate their local communities by speaking with TV stations, Drs via medical rounds, journalists etc and then share the online links or articles so we can post on our site and in our forums. They also hold their own Family Fundraisers and have donated at least $5000 in the last 2-3 years.
  5. What have and haven't they accomplished so far?
    SInce 1991, we have grown from a Group of 10 Families in the US to over 5000 from all over the world.
    Although we have made great strides in creating FOD awareness and offering support and networking, we are still striving to raise enough funds so we can offer grants to train new metabolic professionals in the US, and grants for future FOD research. It takes a very long time to raise at least $50,000 in each account before we can offer a grant.
    We are gaining new Families and professionals at our Conferences, but it would be terrific if we could offer more Family scholarships to help with travel and hotel costs so more could attend from both the US and abroad.
Service Areas

Self-reported

International

The FOD Group is based in the US but we provide support via email/phone/website/Email List/facebook all over the world. Deb also offers local pro-bono one-on-one grief consultations for bereaved parents living with the death of a child of any age and from any cause in the Lansing, MI area by appointment only. Other losses (spouse/partner, parent etc) are supported as well. We also raise funds for future  training of new metabolic professionals and for future FOD research.

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Financials

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Operations

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

FOD Family Support Group

Leadership

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Principal Officer

Deb Lee Gould, MEd

STATEMENT FROM THE Principal Officer

"Because Fatty Oxidation Disorders are relatively 'new' disorders, a major purpose of our Group is to create awareness around the world. And with that awareness more and more Families will KNOW that we are here to support them all along the way! As Expanded Newborn Screening spreads throughout the world, more babies will be diagnosed and hopefully Families will contact us for more information and support. We not only offer info on our website www.fodsupport.org, but we also have a presence on facebook. Anyone wishing to donate will be helping us with Conference costs (we have a National Metabolic Conference every two years), daily costs, and for raising funds to train future FOD clinicians and for FOD research, as well as for a community outreach for grief support for Families living in the Lansing, MI area - Deb offers probono face-to-face grief support for the death of a child or any other loved one."

Governance

BOARD CHAIR

Deb Lee Gould, MEd

FOD Family Support Group

Term: Jan 2007 -

BOARD LEADERSHIP PRACTICES

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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?


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CEO OVERSIGHT

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


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ETHICS & TRANSPARENCY

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


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BOARD COMPOSITION

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


RESPONSE NOT PROVIDED

BOARD PERFORMANCE

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