Purpose: to identify areas of need for individuals and families impacted by mitochondrial disease. By increasing awareness of specific need individuals/families experience, we are better able to connect this very deserving population to the care and services needed/desired that promote autonomy and reduce stress. The questions on this form are optional and you may complete to your level of comfortability. Please know that while UMDF staff may be unable to directly assist with some identified needs, your responses help us understand where we need to grow in competency and understanding of available resources so we can connect those we support as quickly and efficiently as possible. If you have feedback, questions or concerns please contact one of our Education & Support staff: Bethany Bonner Bethany.bonner@umdf.org or Margaret Moore Margaret.moore@umdf.org  

First Name *

Last Name *

Email *

Race/Ethnicity: Asian African American Caucasian Pacific Islander Hispanic/Latino Mixed American Indian/Alaska Native

Preferred Pronouns? He/Him She/Her They/Them He/They She/They Not Listed Prefer not to self identify

Education Level High School/GED  Some College Associate's Degree Bachelor’s Degree  Master’s Degree   Doctorate Degree Other

Relationship Status Single Married Divorced Separated Widowed

How did you connect with the UMDF? Support Intake Ambassador Fundraiser

When it comes to mitochondrial disease, are you a/an (check all applicable): * Affected IndividualParent/CaregiverHealthcare ProviderOther (Friend/Relative)

Do you have … A genetically-confirmed diagnosis Pending diagnosis Clinical diagnosis but not genetically confirmed No testing yet-but recommended No testing yet-not sure if genetic testing is right for me

What is your diagnosis? Alpers Disease Barth Syndrome Beta Oxidation Defects Carnitine-Acyl-Carnitine Deficiency Carnitine Deficiency Complex I Deficiency Complex II Deficiency Complex III Deficiency Complex IV Deficiency / COX Deficiency Complex V Deficiency CPT I Deficiency Creatine Deficiency Syndromes Co-Enzyme Q10 Deficiency CPEO CPT II KSS Lactic Acidosis LBSL – Leukodystrophy LCAD LCHAD Leigh Disease or Syndrome LHON Luft Disease MAD / Glutaric Aciduria Type II MCAD MERRF MELAS MEPAN MIRAS MitochondriaL DNA Depletion Mitochondrial Encephalopathy Mitochondrial Myopathy MNGIE NARP Pearson Syndrome POLG Mutations Primary Mitochondrial Myopathy Pyruvate Carboxylase Deficiency Pyruvate Dehydrogenase Deficiency SANDO SCAD SCHAD TK2 VLCAD Other

When did you receive your diagnosis?

Who diagnosed you (physician and/or healthcare institution)/oversaw the diagnostic process?

What type of test was administered to determine diagnosis? Buccal swab Blood draw Muscle biopsy Other

How many members of your household?

Do you have care team you currently work with to monitor and manage your care? YesNo

Do you feel heard, understood and adequately supported by your current care team? YesNo

Please identify areas of need below, if any: (Check all that apply) Primary CareOther healthcare specialties (OBGYN, ophthalmology, podiatry, PT etc.)Mobility aids/equipmentCare management/nurse navigationHome health support (aides, PT etc.)Home modifications (ex. shower bars, ramps)Genetic testing and/or counselingCopay/medication cost assistanceCompounding pharmacy optionsMedical advocacyEmergency room letters for mito treatment protocolsOther

Mental Health/Psychological Care Areas of Need (check all that apply) Primary CareOther healthcare specialties (OBGYN, ophthalmology, podiatry, PT etc.)Mobility aids/equipmentCare management/nurse navigationHome health support (aides, PT etc.)Home modifications (ex. shower bars, ramps)Genetic testing and/or counselingCopay/medication cost assistanceCompounding pharmacy optionsMedical advocacyEmergency room letters for mito treatment protocolsOther

Do you currently have insurance coverage? YesNo

Would you like assistance exploring coverage options? YesNo

Are you connected to any government waiver/assistance programs? YesNo

If no, would you like to explore eligibility for government waiver programs? YesNo

Do you have a steady source of income? (Check all that apply) Employment (full-time or part-time)Social SecurityPensionSSDI (Social Security Disability Income)SSI (Supplemental Security Income)No income

Please indicate annual income range below if comfortable (this can help us determine eligibility for resources): $0-15,000 annually $16,000-30,000 annually $31,000-45,000 annually $46,000-60,000 annually $61,000-75,000 annually $76,000-90,000 annually $91,000-100,000+ annually Prefer not to answer

If you are a caregiver, have you explored paid caregiver opportunities in your state? YesNo

Have you applied for Social Security Disability? YesNo

Were you approved? YesNo

Do you need assistance connecting to an advocate? YesNo

Has your income or financial stability been impacted by the onset/diagnosis of mitochondrial disease symptoms or by caring for someone with mitochondrial disease? NoLost employmentDifficulty with approval for SSD/SSDIRelying on spouse/partner/family/otherOther

If a caregiver to an affected child, does your child receive accommodations at their school? YesNo

Is it adequate? YesNo

Do you need support with education accommodation advocacy for yourself or child? YesNo

Transportation Needs I have consistent means of transportation (I can drive or have someone that can help) Need medical-specific transportation assistance No means of transportation

Is your housing situation secure? YesNo

Do you : Own Rent Nursing Facility Currently Unhoused Other

Do you need assistance with any of the following: Rental/mortgage assistanceApplication for subsidized housingInformation & referral for supported living or in-home supportUtility Assistance (heating/cooling, electric, gas, water etc.)Other

Food Security Food/meal secureNeed for pantry/food bank resourcesNeed for SNAP (Supplemental Nutrition Assistance Program)Need for meal delivery resources (Meals on Wheels, Mom’s Meals, etc.)Need for nutrition education resources/dietician supportOther

Do you feel understood/supported by loved ones when you experience symptom flare-ups? YesNoN/A

Do you feel understood/supported by your employer when it comes to your condition or caring for someone with mitochondrial disease? YesNoN/A

Do you feel understood/supported by healthcare professionals when you meet with them? YesNoN/A

For affected individuals, when it comes to making plans (skip if N/A): I feel uncomfortable committing to plans because I never know how I will be feeling the day of plans and might have to cancel/rescheduleI feel comfortable advocating for my physical and mental health needs and cancel/reschedule when necessaryI avoid making plans altogether to avoid canceling/rescheduling last minute

For caregivers/loved ones, when it comes to making plans (skip if N/A): I feel uncomfortable committing to plans because I never know when I will be neededI feel comfortable advocating for my physical and mental health needs and cancel/reschedule when necessaryI avoid making plans altogether to avoid canceling/rescheduling last minute

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