Disease, Disorders, Medical Disciplines

FOD Family Support Group

aka FOD Group

Okemos, MI

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 Conferences, the training of new FOD Professionals, and for future FOD research.

Ruling Year

2007

Principal Officer

Deb Lee Gould, MEd

Main Address

PO Box 54

Okemos, MI 48805 USA

Keywords

awareness, newborn screening,research,clinical training

EIN

83-0471342

 Number

6185383778

Cause Area (NTEE Code)

Single Organization Support (G11)

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Our programs

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

SOURCE: Self-reported by organization

Family Support and Networking

FOD/OAA International Metabolic Conference

Grief Support

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Charting Impact

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What have and haven't they accomplished so far?

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.

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.

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.

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.

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.

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Operations

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Board Leadership Practices

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SOURCE: Self-reported by organization

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?

Not Applicable

CEO OVERSIGHT

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

Not Applicable

ETHICS & TRANSPARENCY

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Not Applicable

BOARD COMPOSITION

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

Not Applicable

BOARD PERFORMANCE

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

Not Applicable