MitoAction Mito Community Survey

1. What is your connection to mito? *This question is required.

• Patient
• Spouse of a patient
• Parent of a patient
• Daughter of a patient
• Son of a patient
• Sibling of a patient
• Grandparent of a patient
• Grandchild of a patient
• Aunt of a patient
• Uncle of a patient
• Niece of patient
• Nephew of a patient
• Caregiver
• Friend of a patient
• Guardian of a patient
• Other Family Member of a patient

2. Who was the driver of the genetic testing?  (choose all that apply) *This question is required.

• Geneticist
• Metabolic Doctor
• Neurologist
• Primary Care Doctor
• Parent
• Self
• Other - Write In Please enter an 'other' value for this selection.

2. What type of mitochondrial disease were you diagnosed with? *This question is required.

• Alper's Disease
• Autosomal Dominante Optic Atrophy (ADOA)
• Barth Syndrome
• Beta-Oxidation Defects
• Carnitine Deficiency
• Chronic Progressive External Ophthalmoplegia (CPEO)
• Complex I Deficiency
• Complex II Deficiency
• Complex III Deficiency
• Complex IV Deficiency
• Complex V Deficiency
• CoQ10 Deficiency
• Creatine Deficiency Syndrome
• Friedreich's Ataxia
• Kearns-Sayre Syndrome (KSS)
• Lactic Acidosis
• Leigh's Disease
• Leukodystrophy
• LHON
• LHON Plus
• Luft Disease
• MELAS
• MEPAN
• MERRF
• MIRAS
• Mitochondrial Cytophy
• Mitochondrial DNA Depletion
• Mitochondrial Encencephalopathy
• Mitochondrial Myopathy
• MNGIE
• Multiple Mitochondrial Dysfunction Syndrome
• NARP
• Pearson Syndrome
• POLG Mutations
• Primary Mitochondrial Myopathy
• Pyruvate Carboxylase Deficiency
• Pyruvate Dehydrogenase Deficiency
• Thymidine Kinase 2 Deficiency (TK2)
• Undiagnosed
• Other - Write In Please enter an 'other' value for this selection.

2. What type of mitochondrial disease was the affected individual diagnosed with? *This question is required.

• Alper's Disease
• Autosomal Dominante Optic Atrophy (ADOA)
• Barth Syndrome
• Beta-Oxidation Defects
• Carnitine Deficiency
• Chronic Progressive External Ophthalmoplegia (CPEO)
• Complex I Deficiency
• Complex II Deficiency
• Complex III Deficiency
• Complex IV Deficiency
• Complex V Deficiency
• CoQ10 Deficiency
• Creatine Deficiency Syndrome
• Friedreich's Ataxia
• Kearns-Sayre Syndrome (KSS)
• Lactic Acidosis
• Leigh's Disease
• Leukodystrophy
• LHON
• LHON Plus
• Luft Disease
• MELAS
• MEPAN
• MERRF
• MIRAS
• Mitochondrial Cytophy
• Mitochondrial DNA Depletion
• Mitochondrial Encencephalopathy
• Mitochondrial Myopathy
• MNGIE
• Multiple Mitochondrial Dysfunction Syndrome
• NARP
• Pearson Syndrome
• POLG Mutations
• Primary Mitochondrial Myopathy
• Pyruvate Carboxylase Deficiency
• Pyruvate Dehydrogenase Deficiency
• Thymidine Kinase 2 Deficiency (TK2)
• Undiagnosed
• Other - Write In Please enter an 'other' value for this selection.

2. Why have you not completed genetic testing? *This question is required.

• Too expensive
• Don't know how or where to get a genetic test
• Doctor doesn't think it is necessary
• Other - Write In Please enter an 'other' value for this selection.

2. Why has the affected individual not completed genetic testing? *This question is required.

• Too expensive
• Don't know how or where to get a genetic test
• Doctor doesn't think it is necessary
• Other - Write In Please enter an 'other' value for this selection.

2. Which other members of your family have a clinical or genetic diagnosis of mitochondrial disease? *This question is required.

• My mother
• My father
• My son
• My daughter
• My brother
• My sister
• Other - Write In Please enter an 'other' value for this selection.

2. Which other members of the affected individual's family have a clinical or genetic diagnosis of mitochondrial disease? *This question is required.

• Their mother
• Their father
• Their son
• Their daughter
• Their brother
• Their sister
• Other - Write In Please enter an 'other' value for this selection.

2. Please choose any responses that apply to this statement: No one else your family ... *This question is required.

• Has a clinical or genetic diagnosis
• Is suspected of having mitochondrial disease

2. Please choose any responses that apply to this statement: No one else in the affected individual's family ... *This question is required.

• Has a clinical or genetic diagnosis
• Is suspected of having mitochondrial disease

2. To what degree do you feel you had to advocate for genetic testing? *This question is required.

Not at all	Only a little	To some extent	Rather much	Very much
Not at all	Only a little	To some extent	Rather much	Very much

2. To what degree do you feel the affected individual had to advocate for genetic testing? *This question is required.

Not at all	Only a little	To some extent	Rather much	Very much
Not at all	Only a little	To some extent	Rather much	Very much

2. What are your most common symptoms? *This question is required.

• Muscle pain
• Muscle fatigue
• Pain - general
• Brain fog / Confusion
• Lack of energy
• Shortness of breath
• Balance coordination problems
• Arrhythmia
• Seizures
• Rhabdomyolysis
• Exercise intolerance
• Dysautonomia
• Hypotonia
• Growth
• Weight gain
• Developmental issues
• Vision issues
• Heart issues
• Kidney issues
• GI issues
• Endocrine issues
• Breathing issues
• Mental health issues
• Neuropathy

2. What are the affected individual's most common symptoms? *This question is required.

• Muscle pain
• Muscle fatigue
• Pain - general
• Brain fog / Confusion
• Lack of energy
• Shortness of breath
• Balance coordination problems
• Arrhythmia
• Seizures
• Rhabdomyolysis
• Exercise intolerance
• Dysautonomia
• Hypotonia
• Growth
• Weight gain
• Development issues
• Vision issues
• Heart issues
• Kidney issues
• GI issues
• Endocrine issues
• Breathing issues
• Mental health issues
• Neuropathy

2. What is the severity of your muscle pain? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of the affected individual's muscle pain? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of your muscle fatigue? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of the affected individual's muscle fatigue? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of your pain - general? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of the affected individual's pain - general? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of your brain fog / confusion? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of the affected individual's brain fog / confusion? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of your lack of energy? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of the affected individual's lack of energy? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of your shortness of breath? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of the affected individual's shortness of breath? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of your balance coordination problems? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of the affected individual's balance coordination problems? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of your arrhythmia? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of the affected individual's arrhythmia? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of your seizures? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of the affected individual's seizures? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of your rhabdomyolysis? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of the affected individual's rhabdomyolysis? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of your exercise intolerance? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of the affected individual's exercise intolerance? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of your dysautonomia? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of the affected individual's dysautonomia? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of your hypotonia? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of the affected individual's hypotonia? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of your growth issues? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of the affected individual's growth issues? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of your weight gain? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of the affected individual's weight gain? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of your developmental issues? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of the affected individual's developmental issues? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of your vision issues? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of the affected individual's vision issues? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of your heart issues? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of the affected individual's heart issues? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of your kidney issues? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of the affected individual's kidney issues? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of your GI issues? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of the affected individual's GI issues? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of your endocrine issues? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of the affected individual's endocrine issues? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of your breathing issues? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of the affected individual's breathing issues? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of your mental health issues? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of the affected individual's mental health issues? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of your neuropathy? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What is the severity of the affected individual's neuropathy? *This question is required.

None	Mild	Moderate	Severe
None	Mild	Moderate	Severe

2. What do you feel is most understood about mitochondrial disease? *This question is required.

• Variability of symptoms
• Severity of disease and symptoms
• Impact of the disease and symptoms
• Variability among family members
• Variability among diagnosis
• That in can be life threatening
• Availability of Clinical Trials
• Mitochondrial disease is progressive

2. What topics are important for you to have resources to better manage your day-to-day with mitochondrial disease? *This question is required.

• Treatment of symptoms
• Connected diseases/conditions
• Mental Health issues
• Resources for coping
• How to effectively work with insurance companies (navigate denials, writing letters, obtain referrals, obtain case coordinators, etc.)
• Protocol letters
• How to prevent suspicion of and/or combat accusations of child abuse/neglect
• Pain management
• Resources for medical trauma
• Helping family and friends understand mito
• Transitioning to young adult (psychosocial adjustment, transitioning from pediatric to adult care, etc.)
• Clinical trial options
• Coverage of the mito cockail
• Connecting with other patients and families
• Other - Write In Please enter an 'other' value for this selection.

3. How much care do you require during an average day? *This question is required.

No care - completely independant	Some care	Full care
No care - completely independant	Some care	Full care

3. How much care does the affected individual require during an average day? *This question is required.

No care - completely independant	Some care	Full care
No care - completely independant	Some care	Full care

3. What healthcare professionals are currently involved in managing your mitochondrial disease? *This question is required.

• Neurologist
• Gastroenterologist
• Cardiologist
• Genetic Counselor
• Opthamologist
• Primary care physcian
• Dermatologist
• Psychologist
• Psychiatrist
• Radiology/Interventional Radiologist
• Immunologist/infectiuos disease
• Rheumatologist
• Endocrinologist
• Pain Management specialist
• Physical therapist
• Pulmonologist
• Geneticist
• Other - Write In Please enter an 'other' value for this selection.

3. What healthcare professionals are currently involved in managing the affected individual's mitochondrial disease? *This question is required.

• Neurologist
• Gastroenterologist
• Cardiologist
• Genetic Counselor
• Opthamologist
• Primary care physcian
• Dermatologist
• Psychologist
• Psychiatrist
• Radiology/Interventional Radiologist
• Immunologist/infectiuos disease
• Rheumatologist
• Endocrinologist
• Pain Management specialist
• Physical therapist
• Pulmonologist
• Geneticist
• Other - Write In Please enter an 'other' value for this selection.

3. To what degree do you feel a developmental disability contributes to your level of independence? *This question is required.

Not at all	Only a little	To some extent	Rather much	Very much
Not at all	Only a little	To some extent	Rather much	Very much

3. To what degree do you feel a developmental disability contributes to the affected individual's level of independence? *This question is required.

Not at all	Only a little	To some extent	Rather much	Very much
Not at all	Only a little	To some extent	Rather much	Very much

3. To what degree do you feel a physical disability contributes to your level of independence? *This question is required.

Not at all	Only a little	To some extent	Rather much	Very much
Not at all	Only a little	To some extent	Rather much	Very much

3. To what degree do you feel a physical disability contributes to the affected individual's level of independence? *This question is required.

Not at all	Only a little	To some extent	Rather much	Very much
Not at all	Only a little	To some extent	Rather much	Very much

3. Which of the following have impacted your ability to perform at work? *This question is required.

• Extreme fatigue
• Pain
• Can't lift things
• Anxiety and depression
• No concentration
• Brain fog
• Pressure from bosses
• Can't sit or stand
• Lack of accommodations
• Other - Write In Please enter an 'other' value for this selection.

3. Which of the following have impacted the affected individual's ability to perform at work? *This question is required.

• Extreme fatigue
• Pain
• Can't lift things
• Anxiety and depression
• No concentration
• Brain fog
• Pressure from bosses
• Can't sit or stand
• Lack of accommodations
• Other - Write In Please enter an 'other' value for this selection.

3. Does having a mitochondrial disease impact the following relationship? *This question is required.

Space Cell	Never	Rarely	Sometimes	Often
Relationships in general	Relationships in general: Never	Relationships in general: Rarely	Relationships in general: Sometimes	Relationships in general: Often
Professional relationships	Professional relationships: Never	Professional relationships: Rarely	Professional relationships: Sometimes	Professional relationships: Often
Romantic Relationships	Romantic Relationships: Never	Romantic Relationships: Rarely	Romantic Relationships: Sometimes	Romantic Relationships: Often
Family Relationships	Family Relationships: Never	Family Relationships: Rarely	Family Relationships: Sometimes	Family Relationships: Often
Friendships	Friendships: Never	Friendships: Rarely	Friendships: Sometimes	Friendships: Often

3. Which of the following mental health issues have you experienced? *This question is required.

• Depression
• Anxiety
• Other - Write In Please enter an 'other' value for this selection.

3. Which of the following mental health issues has the affected indiviudal experienced? *This question is required.

• Depression
• Anxiety
• Other - Write In Please enter an 'other' value for this selection.

3. Which of the following methods have been used to treat your mental health issues? *This question is required.

• Seeing a mental health provider
• Medication
• Prescribed therapy
• None
• Other - Write In Please enter an 'other' value for this selection.

3. Which of the following methods have been used to treat the affected individuals mental health issues? *This question is required.

• Seeing a mental health provider
• Medication
• Prescribed therapy
• None
• Other - Write In Please enter an 'other' value for this selection.

3. Have you ever been bullied or teased about any of the following due to mitochondrial disease? *This question is required.

• Appearance
• Physical limitations
• Cognitive limitations
• Other - Write In Please enter an 'other' value for this selection.
• None of the above

3. Has the affected individual ever been bullied or teased about any of the following due to mitochondrial disease? *This question is required.

• Appearance
• Physical limitations
• Cognitive liminations
• Other - Write In Please enter an 'other' value for this selection.
• Unsure
• None of the above

3. How often do you... *This question is required.

Space Cell	Never	Rarely	Sometimes	Often
Feel lonely/isolated due to mitochondrial disease?	Feel lonely/isolated due to mitochondrial disease?: Never	Feel lonely/isolated due to mitochondrial disease?: Rarely	Feel lonely/isolated due to mitochondrial disease?: Sometimes	Feel lonely/isolated due to mitochondrial disease?: Often
Worry about the uncertainty of your future related to your health care?	Worry about the uncertainty of your future related to your health care?: Never	Worry about the uncertainty of your future related to your health care?: Rarely	Worry about the uncertainty of your future related to your health care?: Sometimes	Worry about the uncertainty of your future related to your health care?: Often
Worry about your financial situation?	Worry about your financial situation?: Never	Worry about your financial situation?: Rarely	Worry about your financial situation?: Sometimes	Worry about your financial situation?: Often
Worry about access to medical care?	Worry about access to medical care?: Never	Worry about access to medical care?: Rarely	Worry about access to medical care?: Sometimes	Worry about access to medical care?: Often
Worry about access to medications?	Worry about access to medications?: Never	Worry about access to medications?: Rarely	Worry about access to medications?: Sometimes	Worry about access to medications?: Often

3. How often does the affected individual... *This question is required.

Space Cell	Never	Rarely	Sometimes	Often
Feel lonely/isolated due to mitochondrial disease?	Feel lonely/isolated due to mitochondrial disease?: Never	Feel lonely/isolated due to mitochondrial disease?: Rarely	Feel lonely/isolated due to mitochondrial disease?: Sometimes	Feel lonely/isolated due to mitochondrial disease?: Often
Worry about the uncertainty of their future related to their health care?	Worry about the uncertainty of their future related to their health care?: Never	Worry about the uncertainty of their future related to their health care?: Rarely	Worry about the uncertainty of their future related to their health care?: Sometimes	Worry about the uncertainty of their future related to their health care?: Often
Worry about their financial situation?	Worry about their financial situation?: Never	Worry about their financial situation?: Rarely	Worry about their financial situation?: Sometimes	Worry about their financial situation?: Often
Worry about access to medical care?	Worry about access to medical care?: Never	Worry about access to medical care?: Rarely	Worry about access to medical care?: Sometimes	Worry about access to medical care?: Often
Worry about access to medications?	Worry about access to medications?: Never	Worry about access to medications?: Rarely	Worry about access to medications?: Sometimes	Worry about access to medications?: Often

3. Is your family? *This question is required.

• Supportive to your overall needs
• Emotionally supportive
• Understanding
• Financially supportive
• Supportive with transportation
• Not supportive in any way

3. Is the affected individual's family? *This question is required.

• Supportive to their overall needs
• Emotionally supportive
• Understanding
• Financially supportive
• Supportive with transportation
• Not supportive in any way

3. Is your home state? *This question is required.

• Supportive to your overall needs
• Emotionally supportive
• Understanding
• Financially supportive
• Supportive with transportation
• Able to share resources that are available
• Not supportive in any way

3. Is the affected individual's home state? *This question is required.

• Supportive to their overall needs
• Emotionally supportive
• Understanding
• Financially supportive
• Supportive with transportation
• Able to share resources that are available
• Not supportive in any way

3. Where do you seek support? *This question is required.

• Family
• Facebook
• Instagram
• Other social media
• MitoAction
• Other patient advocacy groups
• Therapist / counselor / psychiatrist
• Health provider
• Hospital
• Conferences
• Local support groups

3. Where does the affected individual seek support? *This question is required.

• Family
• Facebook
• Instagram
• Other social media
• MitoAction
• Other patient advocacy groups
• Therapist / counselor / psychiatrist
• Health provider
• Hospital
• Conferences
• Local support groups

3. Why are you not seeing a mitochondrial disease expert? *This question is required.

• Don't have a diagnosis
• Wait time is too long
• Too far to travel
• Prefer local team
• Too expensive - insurance doesn't cover it
• Other - Write In Please enter an 'other' value for this selection.

3. Why does the affected individual not see mitochondrial disease expert? *This question is required.

• Don't have a diagnosis
• Wait time is too long
• Too far to travel
• Prefer local team
• Too expensive - insurance doesn't cover it
• Other - Write In Please enter an 'other' value for this selection.

3. What reason(s) would you consider participating in a clinical trial? *This question is required.

• Option for treatment
• Potential benefit for others with mitochondrial disease
• Access to new treatments
• Perceived higher level of care/follow-up
• Ease of participation
• Monetary compensation
• Doctor recommendation
• Other treatments didn’t work
• Other - Write In Please enter an 'other' value for this selection.

3. What reason(s) would the affected individual consider participating in a clinical trial? *This question is required.

• Option for treatment
• Potential benefit for others with mitochondrial disease
• Access to new treatments
• Perceived higher level of care/follow-up
• Ease of participation
• Monetary compensation
• Doctor recommendation
• Other treatments didn’t work
• Other - Write In Please enter an 'other' value for this selection.

3. What reason(s) would you not consider participating in a clinical trial? *This question is required.

• Fear of adverse reaction or death
• Travel
• Too many visits
• Time off of work
• Lack of understanding of the trial
• Lack of monetary compensation
• Not aware of available trials
• Too many required tests
• Other - Write In Please enter an 'other' value for this selection.

3. What reason(s) would the affected individual have for not considering participating in a clinical trial? *This question is required.

• Fear of adverse reaction or death
• Travel
• Too many visits
• Time off of work
• Lack of understanding of the trial
• Lack of monetary compensation
• Not aware of available trials
• Too many required tests
• Other - Write In Please enter an 'other' value for this selection.

3. How do you learn about clinical trials? *This question is required.

• Physician
• Clinicaltrials.gov website
• Patient advocacy groups
• Support groups
• Other patients
• Internet search
• Pharmaceutical company website
• Social media
• Other - Write In Please enter an 'other' value for this selection.

3. How does the affected individual learn about clinical trials? *This question is required.

• Physician
• Clinicaltrials.gov website
• Patient advocacy groups
• Support groups
• Other patients
• Internet search
• Pharmaceutical company website
• Social media
• Other - Write In Please enter an 'other' value for this selection.

3. What do you feel should be the research priorities for mitochondrial disease? *This question is required.

• Diagnosis
• Pain
• Fatigue
• Seizures
• Muscle Weakness
• Other - Write In Please enter an 'other' value for this selection.

4. What type of support groups would you be interested in participating in? *This question is required.

• Adult Support Groups
• Teen Support Groups
• Spouse Support Groups
• Caregiver Support Groups
• Disease Specific Support Groups
• Parents Support Groups
• Grandparent Support Groups
• Men's Support Groups
• Other - Write In Please enter an 'other' value for this selection.

4. What type of support groups would the affected individual be interested in participating in? *This question is required.

• Adult Support Groups
• Teen Support Groups
• Spouse Support Groups
• Caregiver Support Groups
• Disease Specific Support Groups
• Parents Support Groups
• Grandparent Support Groups
• Men's Support Groups
• Not applicable
• Unsure
• Other - Write In Please enter an 'other' value for this selection.

4. When is the best time of day to attend support group calls? *This question is required.

• Morning (8am - 11am Eastern Standard Time)
• Afternoon (12pm - 4pm Eastern Standard Time)
• Evening (5pm - 10pm Eastern Standard Time)
• Not applicable

5. What day(s) of the week are best to attend support group calls? *This question is required.

• Sunday
• Monday
• Tuesday
• Wednesday
• Thursday
• Friday
• Saturday
• Not applicable

6. I would like more information on the following programs... *This question is required.

• MitoSocials - Connect with other patients, families and caregivers in your local community to develop a circle of support close to home.
• Mito Expert Series - Gain knowledge from our guest speakers on topics important to the mito community.
• Energy in Action Podcast - Listen in for conversations with patients, families, researchers and thought leaders in the mitochondrial disease community.
• New Patient Kits - Designed to provide a detailed overview of diagnosis, treatment, symptoms, living day-to-day and more.
• Mito Matters Newsletter - Stay updated on news and "mito matters."
• My Mito - Manage your day-to-day with mito while documenting your journey over time. Help clinicians and researchers learn more about mitochondrial disease.
• Clinical Trial Finder - Find the latest information on current clinical trials.
• Mito411 - Receive "live" one-on-one support from those who understand our journey with mito.
• MitoChampions - Volunteer leaders who are instrumental in raising awareness of mito, providing hope to others affected by this disease and being a voice for the entire mito community.
• MomVocates - Mito mom's who share with one another the real ups and downs of living day-to-day with mito.
• Matthew Harty Camper Fund - This fund allows children with mito and their families to attend summer camp and awards scholarships to high school graduates pursuing their college degree.
• Marcel's Way Family Fund - Financial support to help ease the burden for those affected by mito.
• Matthew Harty Camper Fund Wish Trips - An extension of the Matthew Harty Camper Fund. This program allows children with mito and their families experience once-in-a-lifetime wish trips to Give Kids the World Village.
• MitoSantas - Christmas elves purchase gifts for children 18 and under affected by mitochondrial disease and their siblings ages 16 and under.
• Energy Walk - Find a walk and join us in raising awareness of mitochondrial disease.
• Sandra K. Russell Derby Day Benefit for Mito - Held in honor of Sandra Russell, who lost her battle with mito in 2008.
• Legislative Advocacy - Be prepared to face non-medical issues with information and community resources to support you and your family.
• Other - Write In Please enter an 'other' value for this selection.
• None of the above