FOD Family Support Group

'We are All in This Together'

aka FOD Group   |   Okemos, MI   |  www.fodsupport.org

Mission

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 Services and Programs, FOD Regional MeetUps/Seminars, daily expenses, online support forums, Grief Support, and for sending donations to FOD research facilities and clinical training centers.

Ruling year info

2007

Director & Grief Consultant

Deb Lee Gould, MEd

Main address

PO Box 54

Okemos, MI 48805 USA

Show more contact info

Formerly known as

MCAD Family Support Group

EIN

83-0471342

NTEE code info

Single Organization Support (G11)

IRS filing requirement

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

Sign in or create an account to view Form(s) 990 for 2020, 2019 and 2018.
Register now

Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The main issue we are addressing in 2019 is getting more of our Families involved in volunteering for our projects. This has been an ongoing issue since the beginning of the Group. As the Director since 1991, I (Deb) have done all of the administration of the Group and I am trying to find new Families to delegate various tasks. We are moving from having a very large Conference every 2 years to a smaller format of Regional MeetUps, BUT that requires Family involvement and commitment. If we do not get volunteers then there may be no Regional MeetUps. So I am encouraging Families through our social media formats to Volunteer. I am also offering zoom video meetings to further explain or teach what is needed in order to fulfill various projects.

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 Support and Networking

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

Population(s) Served
People with diseases and illnesses

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.

Population(s) Served
People with diseases and illnesses

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.

Population(s) Served
Adults

Where we work

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.

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 Metabolic Conference/ or Regional MeetUps every 2 years

To offer probono Grief Support services via face-to-face or by phone/zoom 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 around the world 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.

Because of costs, we do almost all of our networking and support Online - facebook, google groups, skype, zoom, 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 or MeetUps.

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 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.

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.

Financials

FOD Family Support Group
lock

Unlock financial insights by subscribing to our monthly plan.

Subscribe

Unlock nonprofit financial insights that will help you make more informed decisions. Try our 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.

Operations

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

lock

Connect with nonprofit leaders

Subscribe

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.

lock

Connect with nonprofit leaders

Subscribe

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.

FOD Family Support Group

Board of directors
as of 3/29/2021
SOURCE: Self-reported by organization
Board chair

Deb Lee Gould, MEd

FOD Family Support Group

Term: 2007 -

Mary Lingle

no affiliation

Deb Lee Gould, MEd

no affiliation

Daniel R Gould, PhD

no affiliation

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 03/29/2021

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

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data