Marcel’s Way

Marcel’s Way was founded in 2003 by a group of “Mito Mothers” who came together because they saw that families needed information, education, and support to live as normal a life as possible with their newly diagnosed children suffering from mitochondrial disorders. In 2005, Marcel’s Way launched the Marcel’s Way Family Fund to help families cover the extra expenses they faced to care for their children. Grants were made to assist with the high cost of medications, services, and medical equipment.  In 2011, MitoAction agreed to carry on the legacy of the Marcel’s Way Family Fund by offering a grants-based family assistance program.

Why is a Family-Assistance Program Important for Someone Diagnosed with Mito?

Due to the complexity of the disease, no standards of care exist today for children and adults who have mitochondrial disease. As a result, many things (wheelchairs, medicines, diagnostic tests, etc.) that would be 100% covered by insurance or other resource programs for other diseases are not always covered for our mito families.

It is MitoAction’s vision that this program fund will grow so that we can offer support to every family with mitochondrial disease who ever faces an overwhelming need, thus making one part of their difficult journey a little easier.

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How to Apply for a Grant from the Marcel’s Way Family Fund

AWARDS: Grants will be no more than $500 and will be awarded, based on need, to families who
are struggling financially with costs associated with mitochondrial disease. Grants are awarded once
per lifetime, per patient.

ELIGIBILITY: Patients and families of patients living within the United States with a mitochondrial disorder will be eligible to apply for grants. There is no income eligibility to apply.

ELIGIBLE COSTS: Expenses that “promote health” or “provide relief” could include:

• Medical costs not covered by insurance;
• Housing costs for families while patients are receiving treatment away from home;
• Costs for special equipment, services, or supplies;
• Costs of modifying a home, vehicle, or workspace; or
• Costs of respite care or suitable recreational activities.

To apply for a grant from the Marcel’s Way Family Fund, submit the Application below. As part of the Application, we require two letters be submitted to MitoAction on your behalf describing the Beneficiary’s condition and confirming the usefulness of the funds requested. One letter must come from the Beneficiary’s Doctor and one letter from a Community Worker (Social Worker, Case Manager, Clergy Member, etc.). After you submit the Application below, you will receive an email with cover letters for you to submit to your Doctor and Community Worker in order to instruct them on what we require and how they can submit the information.

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"*" indicates required fields

Step 1 of 7 – General Information

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Diagnosis Type*

Clinically Confirmed

Genetically Confirmed

Undiagnosed

Sorry, a clinically or genetically confirmed diagnosis is required to be eligible for a Marcel’s Way grant.

Who is the Beneficiary of the Grant?*

Myself

My Child, Dependent or Ward

Are You 18 years or Older?*

Yes

No

Sorry, this application must be filled out by someone over the age of 18. Please have your parent or guardian fill out and submit the application.

Household Type*

Single Parent / Guardian

Two Parents / Guardians

Number of Family Members Affected by Mitochondrial Disease (including Applicant/Beneficiary)*

Number of Previously Approved Applications to Marcel’s Way Family Fund of MitoAction*

Beneficiary’s Information

Please enter the details for the beneficiary of the grant. If you are filling this Application out for yourself, this is your information.

Beneficiary’s Name*

First Last

Beneficiary’s Email*

Beneficiary’s Phone*

Beneficiary’s Address*

Street Address Address Line 2 City AlabamaAlaskaAmerican SamoaArizonaArkansasCaliforniaColoradoConnecticutDelawareDistrict of ColumbiaFloridaGeorgiaGuamHawaiiIdahoIllinoisIndianaIowaKansasKentuckyLouisianaMaineMarylandMassachusettsMichiganMinnesotaMississippiMissouriMontanaNebraskaNevadaNew HampshireNew JerseyNew MexicoNew YorkNorth CarolinaNorth DakotaNorthern Mariana IslandsOhioOklahomaOregonPennsylvaniaPuerto RicoRhode IslandSouth CarolinaSouth DakotaTennesseeTexasUtahU.S. Virgin IslandsVermontVirginiaWashingtonWest VirginiaWisconsinWyomingArmed Forces AmericasArmed Forces EuropeArmed Forces Pacific State ZIP Code

Beneficiary’s Date of Birth*

MM slash DD slash YYYY

Beneficiary’s Gender*

man/boywoman/girltransgendernon-binaryagendergender non-conforminggender fluidgenderqueertwo spiritothernone of theseprefer not to state

Beneficiary’s Primary Language*

ArabicEnglishSpanishBengaliBhojpuriChinese- MandarinChinese – Wu or ShanghaineseChinese – Yue or CantoneseFrenchGermanGujaratiHausaHindiIgboItalianJapaneseKoreanMarathiPersian IranianPortuguesePunjabiRussianTagalogTamilTeluguTurkishUkrainianUrduVietnameseOther

What is the Dependent Status of the Beneficiary?*

Beneficiary is a legal dependent of parent(s) or guardian(s).

Beneficiary has a court-appointed guardian.

Beneficiary is independent (not claimed as a dependent).

Parent/Guardian 1

If you are filling this Application out for your dependent or ward, this is your information.

Parent/Guardian Name*

First Last

Parent/Guardian Email*

Parent/Guardian Phone*

Parent/Guardian 2

Parent/Guardian 2 Name*

First Last

Parent/Guardian 2 Email

Parent/Guardian 2 Phone

Parent/Guardian Address

Parent/Guardian 1’s Address

If different than Beneficiary’s Address.

Street Address Address Line 2 City AlabamaAlaskaAmerican SamoaArizonaArkansasCaliforniaColoradoConnecticutDelawareDistrict of ColumbiaFloridaGeorgiaGuamHawaiiIdahoIllinoisIndianaIowaKansasKentuckyLouisianaMaineMarylandMassachusettsMichiganMinnesotaMississippiMissouriMontanaNebraskaNevadaNew HampshireNew JerseyNew MexicoNew YorkNorth CarolinaNorth DakotaNorthern Mariana IslandsOhioOklahomaOregonPennsylvaniaPuerto RicoRhode IslandSouth CarolinaSouth DakotaTennesseeTexasUtahU.S. Virgin IslandsVermontVirginiaWashingtonWest VirginiaWisconsinWyomingArmed Forces AmericasArmed Forces EuropeArmed Forces Pacific State ZIP Code

About Your Dependent

Is Your Dependent or Ward Over the Age of 18?*

Yes

No

What is Your Relationship to the Dependent or Ward?*

Parent / Guardian

Court-Appointed Guardian

Household Information

List All People Who Live in Beneficiary's Home (including any Parents/Guardians Entered Previously)

Use the + Icon on the right to add more people.

Name (First and Last)

Date of Birth (mm/dd/yyyy)

Relationship to Applicant

 

Add Remove

Beneficiary’s Diagnosis and Condition

Beneficiary’s Diagnosis*

Please enter your diagnosisACAD9 DeficiencyAlpers' DiseaseAutosomal Dominante Optic Atrophy (ADOA)Barth SyndromeA rare, genetic disorder of lipid metabolism that primarily affects males.CACT DeficiencyComplex I DeficiencyComplex II DeficiencyComplex III DeficiencyComplex IV DeficiencyComplex V DeficiencyCoQ10 DeficiencyCPEOCPT I DeficiencyCPT I DeficiencyCPT II DeficiencyCreatine Deficiency SyndromeCUD/Primary Carnitine DeficiencyFriedreich's AtaxiaImpaired coordination of voluntary muscle movements. Manifestations can include, among others, slurred speech, poor balance, unsteady walking, falling, and involuntary eye movements (nystagmus). UsualGAII/MADD DeficiencyKearns-Sayre Syndrome (KSS)Lactic AcidosisLCHAD DeficiencyLeigh SyndromeLeukodystrophyLHONLHON PlusLuft DiseaseM/SCHAD DeficiencyMCAD DeficiencyMCKAT DeficiencyMELASMEPANMERRFMIRASMitochondrial CytophyMitochondrial DNA DepletionMitochondrial EncencephalopathyMitochondrial MyopathyMMDSMNGIENARPOtherPDCDPearson SyndromeA rare disease that targets the bone marrow and pancreas. Through dysfunction of cells in the bone marrow that produce white and red bloods cells along with platelets.POLG 2POLG Mutationsgenetic variant, genetic changePrimary Mitochondrial MyopathyPyruvate Carboxylase DeficiencyPyruvate Dehydrogenase DeficiencySCAD DeficiencyTFPThymidine Kinase 2 Deficiency (TK2)UndiagnosedVLCAD Deficiency

Beneficiary’s Condition, Including Whether the Beneficiary is Currently Hospitalized or at Home*

Does Beneficiary Use a Wheelchair?*

Yes

No

Comments Regarding Beneficiary's Wheelchair Use

Purpose of Grant Funds

Marcel’s Way Family Fund of MitoAction is intended to support expenses that “promote health” or “provide relief” for an individual affected by mitochondrial disorder. Please explain your intended use of this funding, if your application is approved:*

Letters from Doctor and Community Worker

All applications must include two letters describing the Beneficiary’s condition and confirming the usefulness of the funds requested. One letter must come from the Beneficiary’s Doctor and one letter from a Community Worker (Social Worker, Case Manager, Clergy Member, etc.). These letters must be sent from your Doctor and Community Worker directly to MitoAction on your behalf. We will automatically generate and email you cover letters for you to send to your Doctor and Community Worker.

Name of Doctor*

Name of Community Worker*

Funding Request

Please list the associated costs, available resources, and amount requested from the Marcel’s Way Family Fund.

Estimated Total Cost for the Service, Equipment or Assistance*

Funding Available from Beneficiary and Family*

Funding Available from Insurance, Medicare, Medicaid and Any Other Sources*

Amount Requested from the Marcel’s Way Family Fund*

The maximum request amount is $500.

Please enter a number less than or equal to 500.

Please Attach Documentation of Estimated Cost

Drop files here or Select files

Accepted file types: pdf, jpg, jpeg, gif, png, Max. file size: 5 MB.

Additional Circumstances of Note

Permission and Authorization

I understand that the information given to you will be used solely by members of Marcel’s Way Family Fund of MitoAction Review Committee for consideration of this Grant Application. I understand that all decisions of Marcel’s Way Family Fund of MitoAction are final. I understand that I should not make financial decisions assuming that I will receive payment from Marcel’s Way Family Fund of MitoAction.

I give permission for MitoAction and its Marcel’s Way Family Fund Committee to contact any provider listed on this Application in order to:

• obtain or verify any information needed to determine if Applicant is eligible for the Fund;
• assist in the review of this Application; or
• find other services or resources for which Applicant may be eligible.

Unless I cancel this permission, it will cover the period of time needed to process this Application. I understand that I can rescind this Application and cancel this permission at any time by writing to MitoAction.

I attest that the information presented on this Application is true and complete.

Signature*

Full Name*

For Dependent Applicants, 18 and Older

I have read and understand the information above. I give permission to MitoAction to receive and share information in the ways described above. I also give MitoAction permission to share information about me with my parent(s)/guardian(s), and to receive information from my parent(s)/guardian(s) in order to determine eligibility and the amount of assistance.

Dependent Applicant’s Signature*

Dependent Applicant’s Full Name*

Security Check

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Phone

This field is for validation purposes and should be left unchanged.