Grief Support
As we continue to spread FOD awareness, knowledge and support via our extensive website and Email List, we have also expanded our Group’s Mission to include face-to-face grief support ~ as a community outreach, Deb offers free of charge local [East Lansing, MI area] Grief Support for those touched by an infant/child/adult child’s death from any cause ~ early in your grief or many years down the road. Impending loss/loss of a spouse, sibling, parent and other loved ones are also supported for face-to-face local consults. If you are unable to come for a face-to-face session, I also provide Online Consults via zoom video ~ for Grief Support Only.
Fortunately, with expanded newborn screening taking hold in our country and several other countries, there will be fewer deaths associated with undiagnosed FODs ~ however, there are still many others out in the world living with a death of a child or other loved one, from another cause that might benefit from extra one-on-one support.
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Download Grief Support Brochure [8.5x11 borderless PDF]
There is no charge for consulting with Deb via email, phone/zoom video, or face-to-face consultations (non-denominational) with bereaved parents, or other adult family members, living with the death of a child/children or loved one of any age and from any cause, not just our disorders.
Donations to the FOD Group are definitely welcomed, but are not required!
Note from Deb: If anyone has an individual or family loss and grief concern, and would like another perspective via phone/zoom video, or in person please contact me ~ please also complete the online Secure Grief Intake Form on my site on the Forms page, so I have a better idea of your life and loss situation.
I have experienced a child’s sudden death, the loss of my father at age 3, several miscarriages, have raised an MCAD young adult [as well as his MCAD carrier brother], have a Master’s degree in Education/Counseling [1993], am an ordained non-denominational spiritual counselor, and have I have offered grief support to bereaved parents and others experiencing loss since 1991.
Our correspondence or work together, however, would not take the place of face-to-face therapy with another grief or medical professional if that’s something you choose to do and/or I feel you may benefit from ~ depending on your situation, sometimes further assessment or treatment may be needed.
If you email me and do not get a response, please contact me by phone at 517.381.1940 or use my backup email and/or put my addresses on your safe list – sometimes my address goes to your spam folder. I do not want to miss your request for support!
Grief Consult Office [Map]:
Deb Lee Gould, MEd
3899 Okemos Rd A1
Okemos, MI 48864
Phone 517.381.1940 est
Fax 866.290.5206
deb@bereavedparent.com | www.bereavedparent.org
Mail: PO Box 54 Okemos, MI 48805
Support Resources
Related Metabolic Support Resources
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Rare Disease Patient Support in Japan (use translate link)
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Italy~Inherited Metabolic Diseases(use translate link)
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South Africa ~ Laboratory for Inborn Errors of Metabolism/Support
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Greece ~ Society of Patients & Friends of Patients with Inherited Metabolic Disease (use translate link)
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India ~ Metabolic Errors and Rare Diseases Organization of India (parent support group)
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Mothers United for Moral Support, Inc. (MUMS) (National Parent-to-Parent Network Newsletter)
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Leadiant Biosciences (formerly Sigma-Tau Pharmaceuticals, Inc)
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Regions 1-7 Newborn Screening and Genetics Collaboratives – Family and Professional Resources in the US
[Please Note: Being listed on our site is not an endorsement of that site or organization.]
Information Sites for Metabolic Disorders
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PubMed (search medical article database)
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Society for the Study of Inborn Errors of Metabolism (SSIEM)
Bereavement Resources
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Healing the Grieving Heart TV and Radio Interviews
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Deb’s Grief Consulting practice Face-to-face sessions in the East Lansing/Lansing, MI and Ingham County area for death of loved one from any cause [and also Online sessions for bereaved parents in US]
Educational Articles & Discussions & Creating Awareness Projects
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FOD Awareness Article by Kelly Huber and Deb Lee Gould, MEd ~ ‘The Challenging World of Fatty Oxidation Disorders’ in CoSozo Living magazine June 1, 2014 [no longer online]
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FOD Awareness article by Kelly Huber and Deb Lee Gould, MEd ~ ‘Why us? Grappling with the Realities of a Rare Disease Diagnosis’ in CoSozo Living magazine August 1, 2014 [no longer online]
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FOD Awareness article by Deb Lee Gould, MEd ~ ‘The Power of Support ~ Creating Worldwide Family Support for Fatty Oxidation Disorders (FODs)’ in CoSozo Living magazine Sept 1, 2014 [no longer online]
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College Research Paper: ‘How a Facebook Group Creates a Feeling of Belonging’ by Janet Longmore
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8th Grade FOD Awareness Brochure Project by Anya Porter
Coping & Healing
While families with FODs have their share of happy times and good memories, many have experienced pain, loss and grief as the result of tragic illness and/or death.
We hope that through our section on Coping & Healing you will find information, encouragement, and support that will lead to renewed hope, meaning, joy and light in your life. Remember…You are NOT alone! We Are All in This Together!
••• Those looking for extra support ~ I have a local ‘Grief Support for Bereaved Parents & Families’ practice in the Lansing, MI area (no fees are charged) ~ if you are interested in one-on-one grief support for the death of a child of any age, from any cause ~ early on your grief or many years down the road ~ please email me at deb@bereavedparent.com or call 517.381.1940. Locally, I also support the death of a spouse/partner, parent, sibling or other loved ones. Online Consults are for only the Death of a Child.
More info is on www.bereavedparent.com.•••