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Mitoaction Inc.

 PO Box 51474
 Boston, MA 02205
[P] (888) 648-6228
[F] (888) 648-6228
http://www.mitoaction.org
[email protected]
Kira Mann
Facebook Twitter
INCORPORATED: 2005
 Printable Profile (Summary / Full)
EIN 55-0899427

LAST UPDATED: 11/03/2017
Organization DBA MitoAction
Former Names --
Organization received a competitive grant from the Boston Foundation in the past five years No

Summary

Mission StatementMORE »

The mission of MitoAction is to help today by:
  • Improving quality of life for adults and children affected by mitochondrial disease.
  • Raising awareness about mitochondrial disorders, and their relationship to other diseases.
  • Providing specific and practical materials that help patients to manage their symptoms
  • Connecting the international mitochondrial disease community and to engage pharmaceutical industry working toward therapeutic approaches to mitochondrial disorders.
  • Offering tools that empower patients and caregivers to be advocates for themselves, their family, or their children.

Mission Statement

The mission of MitoAction is to help today by:
  • Improving quality of life for adults and children affected by mitochondrial disease.
  • Raising awareness about mitochondrial disorders, and their relationship to other diseases.
  • Providing specific and practical materials that help patients to manage their symptoms
  • Connecting the international mitochondrial disease community and to engage pharmaceutical industry working toward therapeutic approaches to mitochondrial disorders.
  • Offering tools that empower patients and caregivers to be advocates for themselves, their family, or their children.


FinancialsMORE »

Fiscal Year Jan 01, 2015 to Dec 31, 2015
Projected Income $601,121.00
Projected Expense $622,716.00

ProgramsMORE »

  • Marcel’s Way Family Fund
  • Mito 411 Support Hotline
  • Mito Patient & Family Socials/Support Groups
  • Monthly Mito Expert Series and iTunes library
  • The Matthew Harty Camp & Scholarship Fund

Revenue vs. Expense ($000s)

Expense Breakdown 2015 (%)

Expense Breakdown 2014 (%)

Expense Breakdown 2013 (%)

For more details regarding the organization's financial information, select the financial tab and review available comments.


Overview

Mission Statement

The mission of MitoAction is to help today by:
  • Improving quality of life for adults and children affected by mitochondrial disease.
  • Raising awareness about mitochondrial disorders, and their relationship to other diseases.
  • Providing specific and practical materials that help patients to manage their symptoms
  • Connecting the international mitochondrial disease community and to engage pharmaceutical industry working toward therapeutic approaches to mitochondrial disorders.
  • Offering tools that empower patients and caregivers to be advocates for themselves, their family, or their children.


Background Statement

MitoAction is a nonprofit organization founded by patients, parents, and Boston hospital healthcare leaders who had a vision of improving quality of life for children and adults with mitochondrial disease. The organization began in 2005 as an idea and has evolved from a small New England support group to a dynamic, active service organization helping thousands of patients and families. Despite the growth of the organization, the mission remains the same: to make a measurable impact in the lives of those who are affected by mitochondrial disease through support, education, and efforts to improve patient care.

Impact Statement

SUPPORT & ADVOCACY

Mito 411 Support Hotline is staffed by trained volunteers and responds to nearly 300 calls a year.

Support groups are the weekly lifeline for hundreds of patients and caregivers, in person, on the phone and online. They empower families, remind them they are not alone and provide resources.

EDUCATION

Monthly Mito Expert Series webinars and podcasts have been downloaded 80,000 times and bring experts from around the world to patients and physicians via an interactive format. 

The clinician’s guide for management of mitochondrial disease symptoms is offered free to physicians and nurses online and is accessed 500 times a month.

Energy for Education DVD illustrates the experience of living with Mito and offers tips.

PATIENT CARE & TREATMENT

The Marcel’s Way Family Fund grants money for items that improve quality of life but are financially unattainable, such as adaptive equipment and assistive technology.

Partnerships with researchers and pharma allow us to bring clinical trials to patients. Our outreach helps identify patients, educate physicians and patients about potential therapies, and collaborate on research studies.

Our goals:

· Improve quality of life for those affected by mitochondrial disease

· Raise awareness internationally about mitochondrial disorders and their relationships to other diseases

· Provide specific and practical materials that help patients manage symptoms

· Create tools that empower patients and caregivers to be advocates for themselves or their children

· Increase funding through events and initiatives that engage new supporters


Needs Statement

The five most pressing needs our work addresses:
1) Core programs for affected patients and families (which include the Mito 411 Helpline, Support Groups and Socials and Online Community Education programs) 

2) Programs serving individuals with mitochondrial disease (including the Family Fund and School Advocacy Services)

3) Outreach to educate healthcare providers, therapists and teachers caring for affected adults and children
 
4) Professional education and conferences (including an online clinician’s guide for symptom management)

5) Public awareness and advocacy efforts (including awareness kits, events, and a DVD series as well as an Advocacy Task Force)

Funding for MitoAction’s support, education and clinical research initiatives comes from individual donors and from mission-focused awareness events. Our collaborative partners include Camp Korey, Victory Junction, Double H Ranch, Boston businesses and corporations, national research foundations and Boston hospitals. 85% of annual donations are used to directly support patients and families living with mitochondrial disease.


CEO Statement

When a mitochondrial disease patient or family finds MitoAction, they find hope. They find understanding and acceptance. They find support. They find an advocate.

MitoAction is dedicated to reaching children, adults, and families who are suffering from mitochondrial disease in a way that directly improves their quality of life through support, education, outreach, advocacy, and clinical research initiatives.

Mito can be a lonely, invisible, terrifying disorder … until patients find us. We are here for the Mito community so they are not alone and scared.

Lisa told us: “MitoAction was the first place I looked for help and without the attentive, dedicated help of those working at MitoAction, [my life] never would have improved to this point. Most grateful to all!”

Leslie is grateful that we stand up for those with rare disorders. “Thank you for standing up with families as they build a network of hope.”

And Qian simply stated, “[MitoAction] helped me to not feel alone with mitochondrial disease.”

We take pride in our ability to provide individualized support to every person who needs our assistance. Our patients and families always come first.

I have more than 25 years of nonprofit experience and have championed growth within various patient advocacy organizations. I am thrilled to be working to increase MitoAction’s national impact and presence in the areas of awareness and education. We are excited about the future of the organization; we are positioned to grow and better meet the needs of the families we serve.

I am eager to engage with all members of the mitochondrial disease community to facilitate continued growth of the organization and share in our passion to improve the lives of those affected by this rare disease.

I’d love to hear from you. Please reach out to me at [email protected]

Thank you for taking action with MitoAction.

Kira Mann, Chief Executive Officer


Board Chair Statement

One of the most insidious things about mitochondrial disease is how challenging it is to diagnose. My wife, Catherine, went undiagnosed with the disease for years – if not for her entire life – resulting in endless trips to her mystified doctor and to the emergency room whenever she crashed. It was frustrating and scary for both of us. After years of actively searching for answers, she finally received a diagnosis of mitochondrial disease six years ago. But what was mitochondrial disease?

MitoAction was instrumental in helping us not only to understand Catherine’s diagnosis, but also to learn about resources and strategies that could help in managing this chronic and progressive disease. We began by reading everything we could on the MitoAction’s terrific website (www.mitoaction.org). We then reached out to the MitoAction’s staff and volunteers to answer questions – lots of them. MitoAction then helped us learn strategies to help manage the day-to-day of “Mito” – the stuff that helps you get through those tough times and improve quality of life. And MitoAction has been a lifeline for us to meet other patients and families impacted by the disease, creating a community of support.

I became involved in MitoAction because my wife and I benefited firsthand from the resources MitoAction provides to Mito patients and their families. We decided that we wanted to make sure other patients wouldn’t have to go so long undiagnosed and that those who were diagnosed could benefit – as we had – from the resources of MitoAction. I now serve as President of the Board and my wife and I are significant contributors supporting MitoAction’s mission.

MitoAction is the single best source for information, support, and advocacy for patients with Mito. MitoAction is run by a small but highly dedicated staff that does a tremendous amount with very few resources. But we are currently seeking to broaden the organization’s mission. Originally, MitoAction had not focused on research since any treatment for the disease was still many years away. However, over the last few years several companies have made significant advancements and the first drugs are beginning to reach patients via clinical trials. MitoAction now aims to broaden its scope to help patients and families understand their clinical options and to support these important clinical trials. Basic research has historically not been at the heart of MitoAction’s vision, but supporting patients and these new clinical trials is an exciting and natural extension of the organization’s core. As an example of our efforts, MitoAction has hosted Mitochondrial Disease Clinical Conferences that bring together specialists, primary care physicians, and other clinicians to better educate the medical community on how to diagnose, treat, and manage the disease. MitoAction also has an exciting iPhone App to help Mito patients track their symptoms and to better manage their own care. But there are many other important things we could do with greater resources, and we hope to secure additional funds to expand MitoAction’s scope and better serve our Mito patient community.

Philip A. Borden,

MitoAction Board President

Geographic Area Served

Throughout the United States
GREATER BOSTON REGION, MA
Based in Boston MA but global impact via online outreach.

Organization Categories

  1. Diseases Disorders & Medical Disciplines - Specifically Named Diseases
  2. Health Care - Alliances & Advocacy
  3. -

Independent research has been conducted on this organization's theory of change or on the effectiveness of this organization's program(s)

No

Programs

Marcel’s Way Family Fund

The Marcel's Way Family Fund offers a helping hand in the way of direct financial support to those suffering from mitochondrial disease. Born out of the mission of continuing to improve quality of life for all affected by Mito, the Marcel's Way Family Fund has the potential to change the lives of many children and families who simply cannot afford the full cost of necessary but expensive things such as wheelchairs, adaptive equipment, diagnostic tests, and medicines.


Budget  $25,000.00
Category  Diseases, Disorders & Medical Disciplines, General/Other Diseases & Disorders
Population Served People/Families with of People with Disabilities
Program Short-Term Success  Patients’ lives are immediately enhanced by the Marcel’s Way Family Fund grants. When applicants reach out to us, they are in need of a vital piece of equipment or help. Our family assistance program provides it.
Program Long-Term Success  Due to the complexity of the disease, no standards of care exist for children and adults who have mitochondrial disease. As a result, many things that would be 100% covered by insurance or other resource programs for other diseases are not always covered for our Mito families. Many of our families are financially devastated by Mito. Through this program, we are able to provide families with these necessary items that improve the patient's quality of life while reducing the financial burden.
Program Success Monitored By 

The Marcel’s Way Family Fund committee is comprised of a diverse group of professionals (social work, nursing) as well as parent representatives. The committee developed a rigorous three-step application process in collaboration with a Boston law firm in order to guarantee non-bias for reviewers. Applications are available online and require information from the family, a letter of support from the patient's physician, and a letter from a community leader (teacher, therapist, priest, etc.). The committee meets quarterly to review applications and votes on grants given. When an application is denied, a committee member provides alternatives to the applicant in a personal letter and follow-up call. Recipients are asked to share a photo, a receipt, and an impact statement of how the grant helped them improve quality of life for the family member affected after receiving assistance from the family fund.

Examples of Program Success   One family, whose child was a grant recipient, speaks directly to the mission of the program. "This grant enabled our family to purchase a brand new iPad Mini for Jake,” said Brock and Becky Hamre, Jake’s parents. “He uses one daily as a communication tool at school and he will now be able to use one at home every day! With all of our extra medical bills associated with Jake’s illness, this grant helped us buy him a tool that we otherwise couldn’t.”

Mito 411 Support Hotline

MitoAction offers a toll-free support hotline that connects to a peer-based volunteer network for the purpose of providing support for patients facing a crisis or undergoing a new mitochondrial disease diagnosis. Our volunteers, who are adult patients or parents of affected children, undergo training led by a nurse and psychologist and are mentored by a pediatric nurse. Our volunteers are available to share their experiences with other patients, parents, spouses, and caregivers of people affected by mitochondrial disease.

Budget  $6,500.00
Category  Diseases, Disorders & Medical Disciplines, General/Other Diseases & Disorders
Population Served People/Families with of People with Disabilities
Program Short-Term Success 

One of the most important impacts of this program is the immediate one-on-one support it provides. Chances are when people call Mito 411, they are desperate. We offer them peace of mind and let them know that they are, in fact, not alone in dealing with this disease. Our Mito 411 volunteers get callers going in the right direction and help get them back on their feet. The information and support we provide gives them control over their situation and helps them overcome feelings of hopelessness.

Program Long-Term Success 

Because mitochondrial disease is such an unusual, little-known diagnosis, most parents and many doctors have never heard of it. Families don’t know where to turn. They are confused, isolated, alone, and overwhelmed. When they call Mito 411, they find answers, get emotional support, and are directed to our many resources. Gaining a general understanding of Mito provides comfort and allows parents to better take care of their kids and advocate for them. Mito 411 lets parents and adults know that they are not alone on this journey.

Program Success Monitored By 

Our Mito 411 volunteers track each call, logging the time, date, contact information, and what was discussed. The volunteers complete evaluation forms each month, which are reviewed annually. Our callers are also asked to rate how helpful the volunteers were. We get anywhere from 10 to 25 calls a month and each caller gets follow-up calls.

Examples of Program Success 

Comments from our callers prove that this program is successful. Several callers have described one of our volunteers as an “angel.” One caller told her volunteer that Mito 411 saved her when she was most desperate. Others say that just hearing that someone “gets it” and knows what they are going through means so much to them. All our callers express their deepest gratitude to our volunteers. Many of our callers become more involved in our organization, exploring the resources available on our website after being directed there by volunteers and coming back as Mito 411 volunteers.


Mito Patient & Family Socials/Support Groups

Our support programs bring people together in person, on the phone, and online. We had heard many people express their desire to meet other Mito families in their communities so the Mito Patient & Family Socials were born in 2011. We seek volunteers from around the country to host these low-key gatherings that allow Mito families to meet each other in person, share stories, give and get support, and realize they're not alone on this difficult journey. We offer support groups via teleconference every month. People regularly call into the following support groups: for newly diagnosed patients, for parents, and for adult patients and spouses. We also have a presence on social media for our community members to ask questions, share stories, find a shoulder to lean on, and more.

Budget  $8,000.00
Category  Diseases, Disorders & Medical Disciplines, General/Other Diseases & Disorders
Population Served People/Families with of People with Disabilities
Program Short-Term Success 

The most immediate impact of our support groups is the camaraderie. So many friendships have grown from these groups. For the Socials, the Mito kids who attend get a chance to see that there are other kids just like them, which is amazing and esteem-building. Just knowing there’s someone out there who understands them is a gift for our community.

Program Long-Term Success  Support is vital in the Mito community, whether it’s close to home with our Mito Socials, over the phone with our teleconference support groups, or on social media. Mitochondrial disease is a very lonely disorder. People feel isolated and alone because they don’t know anyone else with Mito. These groups connect people who are dealing with similar things. For Mito families, this knowledge and these friendships are life-changing. Several private Facebook groups have grown out of our Mito Socials so the attendees can keep in touch with each other between face-to-face gatherings. Callers to our phone support groups have exchanged email addresses to keep in touch between calls. These support groups keep our patients going.
Program Success Monitored By  We have had 50 Mito Socials since the program’s inception in mid-2011. After the Socials, the Social coordinator sends emails to attendees thanking them for attending and asking if they would like to help MitoAction by spreading awareness or volunteering. Several attendees have pledged to host their own Socials and many have agreed to distribute awareness materials. The teleconference support groups draw regulars, who look forward to the monthly calls. We’ve relied on some of our regular callers to reach out to new patients to make them feel welcome and comfortable. We also have regular posters on our social media as well as a steady stream of newcomers.
Examples of Program Success  “I had the opportunity to host a MitoAction Social in Atlanta, GA,” writes one of our Mito Social hosts. “My children, 8 and 9 years old at the time, were asking great questions about Mito: Who has Mito, do they look like me? I was reassured that it would be a stress-free opportunity to meet other Mito families. MitoAction organized everything for me! Our family has had the opportunity to meet wonderful families that ‘look’ just like us. My family and attendees left the Social knowing they have a community of Mito friends who are going through similar challenges, experiences, and celebrations. It has been so amazing to meet so many Mito families in Georgia and to be able to communicate and share information and support. I'm very thankful to MitoAction for making this opportunity possible!”

Monthly Mito Expert Series and iTunes library

We offer monthly international toll-free teleconferences for patients, families, and clinicians with guest speakers on topics important to the Mito community. This program offers patients, families, and healthcare providers access to experts regardless of geographic or accessibility limitations. Meetings are recorded and posted on iTunes and online for future reference. We disseminate the information three ways: live teleconference via toll-free call; more than 115 archived audio files in our iTunes library; and a patient-friendly summary posted on our website.
Budget  $24,000.00
Category  Diseases, Disorders & Medical Disciplines, General/Other Diseases & Disorders
Population Served People/Families with of People with Disabilities
Program Short-Term Success 

Many callers will participate in our teleconferences because the topic of the day may be an issue they are currently facing. The knowledge gained from the teleconference will allow them to take the next steps right away. This direct access and ability to ask questions guarantees that they’ll get the answers they need. We often get people calling or emailing us with specific questions. Because of our extensive iTunes library, we can direct them to a particular call for more information. We also get people who were on the call who want to listen to it again. Some of our patients even refer the podcasts to family, physicians, and others.

Program Long-Term Success 

With so few Mito experts across the country, these teleconferences offer patients unprecedented direct access to physicians, pharmacists, nurses, and others. We are committed to bringing the Mito community expertise and opportunities to learn from and ask questions of experts in a free, accessible, and readily available format. Patients can ask questions and get firsthand information about topics that are important to them. We provide up-to-date information about research and clinical trials, help patients navigate the insurance maze, provide tips, share resources, and so much more. These calls give patients the tools to effectively manage their disease. Knowledge is power in the Mito community and these teleconferences (and their corresponding recordings) offer that.

Program Success Monitored By  Over the course of a year, we get about 1,000 callers attending our teleconferences. In tracking statistics through iTunes and our website, we can tell how often our resources are accessed. Our podcasts have been  downloaded more than 75,000 times. We also track the success of this program from evaluations by our speakers and participant feedback.
Examples of Program Success 

During the calls, our participants thank our speakers and MitoAction profusely for offering this service. Our call on service dogs helped one participant in her process of securing a dog. For some of our calls, we ask people to submit their questions prior to the teleconference and this always draws a lot of responses.


The Matthew Harty Camp & Scholarship Fund

This fund sends children with mitochondrial disease to summer camp and awards scholarships to mitochondrial disease students going onto college.
Budget  $30,000.00
Category  Youth Development, General/Other Youth Development, General/Other
Population Served College Aged (18-26 years) Children Only (5 - 14 years) Adolescents Only (13-19 years)
Program Short-Term Success 
Many Mito kids are apprehensive and scared at the start of camp. By the end of the week, they don't want to leave. The smiles, the joy, the happiness parents see in their kids at the end of camp changes their lives.
 
The scholarship winners are grateful for the funding to help them realize their dreams.  
 
Program Long-Term Success 
Children who otherwise can't attend summer camp are given the chance to have a typical summer experience at medically safe facilities. These experiences are life-changing, giving the campers confidence, support, and friendship. The friends made at camp become lifelong pals.
With the high cost of managing mitochondrial disease, it's difficult for students to find the money to attend college. Our scholarships are lifelines for families to help students get to college. 
Program Success Monitored By  We follow up with the campers (after camp ends) and scholarship winners (at the end of their school year) and interview them about their experiences.   
Examples of Program Success 

“No matter how hard you try to make their lives less about their illness, their lives are all about their illness,” said Kristy Garrigus about her daughter, Dawn. But for four days at Victory Junction camp, Dawn is not a sister or daughter with mitochondrial disease. She doesn’t have to worry about doctor appointments, therapy, and medications. “For those four days, she’s a camper; she plays; she fishes; she does archery; she goes horseback riding,” Kristy said. “She gets acceptance she doesn’t really get all the time.”

This spring, Monica Renteria received a Matthew Harty Scholarship to help pay for her studies at University of Texas at El Paso. “I know getting an education is the only way to effect change and make a difference on me and others,” she said. “It is my wish to work in a research facility looking for a cure for not only mitochondrial, but many other diseases. This scholarship will help me get closer to my dream.”


CEO/Executive Director/Board Comments

MitoAction’s greatest challenge is keeping our services high quality and free of charge for a disease that has no other resources. On the public awareness front, our biggest challenge is explaining mitochondrial disease and having a responsibility of needing to brand the term “Mito” and defining mitochondrial disease in a publicly comprehensible way. It’s difficult to establish funding for programs that are so critical yet also focus on support, quality of life, and clinical patient care as opposed to scientific research.

In terms of opportunities, our organization has grown so rapidly since our conception to the point where people look to MitoAction in a way they look at much larger organizations for support and information. There’s an opportunity to create a foundation for long-term success because we have maintained a strong commitment to excellence in everything, from communication with donors to patient satisfaction with programs. 

Management


CEO/Executive Director Mrs. Kira Mann
CEO Term Start Nov 2016
CEO Email [email protected]
CEO Experience

Kira has more than 25 years of nonprofit experience and has championed growth within various patient advocacy organizations, including the Alzheimer’s Association and the Cutaneous Lymphoma Foundation. Most recently, she served as the Director of Development for Inheritance of Hope, supporting families facing the loss of a parent due to terminal illness. Kira will help MitoAction steward key funding opportunities, strengthen the organization’s business development and governance, and work with the team and the Board of Directors to increase MitoAction’s national impact and presence in the areas of awareness and education of mitochondrial disease. Kira is eager to facilitate continued growth of the organization and share in our passion to improve the lives of those affected by this rare disease. “I am honored to join this passionate team and I look forward to continuing the growth and accomplishments of the staff, Board of Directors, and the MitoAction community,” she said.

Co-CEO --
Co-CEO Term Start --
Co-CEO Email --
Co-CEO Experience

Former CEOs and Terms

Name Start End
-- -- --

Senior Staff

Name Title Experience/Biography
Ginger DeShaney Director of Operations & Communications Ginger spent 24 years in the journalism field as a reporter, editor, and copy editor. She started her career at small newspapers in Wisconsin and worked her way up through bigger newspapers, with editing positions at the Chicago Sun-Times, the Boston Herald, and the Boston Globe. She got her feet wet in the nonprofit world by helping Boston-based One Village at a Time and being elected co-president of the Josiah Quincy School Association, the 501(c)(3) organization at her daughter's elementary school. With MitoAction since March 2010, some of the most rewarding moments of Ginger's professional life have come from doing whatever she can to assist Mito families.
MaryBeth Hollinger RN MSN Director of Education, Support, & Advocacy

MaryBeth Hollinger’s family has been touched by mitochondrial disease and this personal connection motivates her passion to serve the community. MaryBeth spearheads the Mito 411 program, moderates weekly support groups and educational activities, engages with the broader community to assist with awareness and expansion of our education initiatives, and ensures that MitoAction is responding to the issues and concerns facing the mitochondrial community. "Families battling Mito feel alone, isolated, and, at times, targeted because of the true lag in understanding about this disease," MayBeth said. "Being able to offer support, information, and advocacy to other Mito families one-on-one through Mito 411 and the Friday support groups, and increasing availability of educational information has helped me find strength, grow, and give. I love how we share and find understanding and true empathy. I hope to share knowledge and advocacy skills to empower others."

Shawney Lamm Director of Special Events and Fundraising

After college, Shawney had the pleasure of taking care of three children, including a little girl who has Leigh's disease. That was the first time she had heard of mitochondrial disease. Not only did she take care of the little girl, she learned how complex this disease is and wanted to take action by helping MitoAction. So she began volunteering at MitoAction’s Energy Walk & 5K and the Sandra K Russell Derby Day Benefit for Mito. After her third year of helping out and connecting with people from the Mito community, her passion for the organization grew and she took on an official role with MitoAction.

Awards

Award Awarding Organization Year
-- -- --

Affiliations

Affiliation Year
National Organization for Rare Disorders - Member 2011
Member of state association of nonprofits? Yes
Name of state association --

External Assessments and Accreditations

External Assessment or Accreditation Year
-- --

Collaborations

Stealth BioTherapeutics 

Reata Pharmaceuticals
 
Acton Pharmacy 
 
MitoQ 
 
Mass General Hospital

Tufts Medical Center

Children’s Hospital Boston

Virtual Medical Practice

Ropes & Gray

ThriveRx

Camp Korey
 
UMDF
 
Victory Junction 
 

CEO/Executive Director/Board Comments

MitoAction’s success demonstrates the greatest challenges for our organization. Our growth of more than 400% over the last severl years demonstrates how necessary our services are to the community. Prior to MitoAction, patient support and family resources did not exist for those suffering from mitochondrial disease. Our growth demonstrates that our mission deeply resonates with the community whom we serve. Equally, our rapid growth creates a tremendous challenge. How can we continue to know that we will be able to sustain the high-quality level of personalized support that we currently offer for free to families in need? How can we serve a growing number of children and adults who need our help while relying on a donor base only a fraction of the size of those served? As a small organization we struggle to maintain a level of active programming and high-quality service that rivals organizations 5-10 times our size while continuing to find viable means of support.

The burden of fundraising dovetails into the second area that presents both a challenge and an opportunity for MitoAction and for the mitochondrial disease community. Awareness of mitochondrial disease will not only help the organization but will also impact the patient population. A dozen years ago when MitoAction began our first disease awareness campaign, it seemed that no one had ever heard of mitochondrial disease. Today, thanks to our tireless grassroots efforts to put educational materials into the hands of every clinician and affected family, we have not only raised public awareness of mitochondrial disease but we have changed the course of care for the affected individual. No longer are patients told that they are alone, that their child will surely die, or that the disease is so rare that no other family exists for support. Instead, through MitoAction, patients find community, support, answers to the most basic and the most difficult questions, and feel hope through our diligent efforts to support viable treatments that can help our loved ones in this lifetime. Despite our success in this arena, awareness of mitochondrial disease is still an important aspect of our mission. In the way that other diseases (cancer, cystic fibrosis, juvenile diabetes) have benefited from public awareness initiatives and cause marketing partnerships, we feel strongly that mitochondrial disease is also worthy of this attention. For the sake of improving patient care, finding treatments that prolong quality and quantity of life, and identifying more patients, public awareness remains an important challenge.


Foundation Comments

--

Staff Information

Number of Full Time Staff 4
Number of Part Time Staff 1
Number of Volunteers 200
Number of Contract Staff 3
Staff Retention Rate % 100%

Staff Demographics

Ethnicity African American/Black: 1
Asian American/Pacific Islander: 0
Caucasian: 3
Hispanic/Latino: 0
Native American/American Indian: 0
Other: 0
Other (if specified): 0
Gender Female: 100
Male: 0
Not Specified 0

Plans & Policies

Organization has Fundraising Plan? Under Development
Organization has Strategic Plan? Under Development
Years Strategic Plan Considers --
Management Succession Plan Yes
Business Continuity of Operations Plan --
Organization Policies And Procedures Under Development
Nondiscrimination Policy Yes
Whistle Blower Policy Yes
Document Destruction Policy Yes
Directors and Officers Insurance Policy Yes
State Charitable Solicitations Permit Yes
State Registration Yes

Risk Management Provisions

--

Reporting and Evaluations

Management Reports to Board? Yes
CEO Formal Evaluation and Frequency Yes Annually
Senior Management Formal Evaluation and Frequency Yes Annually
Non Management Formal Evaluation and Frequency Yes Annually

Governance


Board Chair Mr. Philip Borden
Board Chair Company Affiliation Galen Partners
Board Chair Term Jan 2015 - Jan 2018
Board Co-Chair --
Board Co-Chair Company Affiliation --
Board Co-Chair Term -

Board Members

Name Company Affiliations Status
Philip Borden Galen Partners Voting
Theresa Couture No Affiliation Exofficio
Jessica Fein Bright Horizons Voting
Marie A. Grant Adelphic Mobile, Inc Voting
Paul Harty Seven Step Recruiting Voting
Tom Keery Keery Family Limited Partnership Voting
Dr. Andrew Nierenberg MD Massachusetts General Hospital Voting
Gordon Russell In The Pink Voting

Constituent Board Members

Name Company Affiliations Status
-- -- --

Youth Board Members

Name Company Affiliations Status
-- -- --

Advisory Board Members

Name Company Affiliations Status
Marcus Favero MD Mass General Hospital NonVoting
Amy Goldstein MD Children's Hospital of Pittsburgh --
David Holtzman MD Mass General Hospital NonVoting
Fran Kendall MD Virtual Medical Practice NonVoting
Margaret Klehm R.N., M.P.H., M.S.N., C.P.N.P Dana-Farber Cancer Institute NonVoting
Mark Korson MD Tufts Floating Hospital for Children NonVoting
Andrew Nierenberg MD Massachusetts General Hospital --
Patricia O'Malley MD Mass General Hospital NonVoting
Margaret Orr MSN EdM FNP-BC Shire Pharma NonVoting
Katherine Sims MD Mass General Hospital NonVoting

Board Demographics

Ethnicity African American/Black: 0
Asian American/Pacific Islander: 0
Caucasian: 100
Hispanic/Latino: 0
Native American/American Indian: 0
Other: 0
Other (if specified): 0
Gender Female: 40
Male: 60
Not Specified 0

Board Information

Board Term Lengths 2
Board Term Limits 2
Board Meeting Attendance % 90%
Written Board Selection Criteria Yes
Written Conflict Of Interest Policy Yes
Percentage of Monetary Contributions 50%
Percentage of In-Kind Contributions --
Constituency Includes Client Representation Yes

Standing Committees

  • Advisory Board / Advisory Council
  • Executive
  • Finance
  • Program / Program Planning

CEO/Executive Director/Board Comments

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Foundation Comments

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Financials


Revenue vs. Expense ($000s)

Expense Breakdown 2015 (%)

Expense Breakdown 2014 (%)

Expense Breakdown 2013 (%)

Fiscal Year Jan 01, 2015 to Dec 31, 2015
Projected Income $601,121.00
Projected Expense $622,716.00
Form 990s

2015 990

2014 990

2013 990

2012 990

2011 990

2010 990

2009 990

Audit Documents

2015 Audit

2014 Audit

2013 Review

2012 Review

2011 Review

2010 Review

IRS Letter of Exemption

IRS Letter of Determination

Prior Three Years Total Revenue and Expense Totals

Fiscal Year 2015 2014 2013
Total Revenue $551,046 $753,821 $452,428
Total Expenses $583,258 $664,313 $334,304

Prior Three Years Revenue Sources

Fiscal Year 2015 2014 2013
Foundation and
Corporation Contributions
-- -- --
Government Contributions $0 $0 $0
    Federal -- -- --
    State -- -- --
    Local -- -- --
    Unspecified -- -- --
Individual Contributions $207,441 $239,797 $127,130
Indirect Public Support -- -- --
Earned Revenue $4,891 $-206 $25,949
Investment Income, Net of Losses $201 $186 $51
Membership Dues -- -- --
Special Events $338,513 $514,044 $299,298
Revenue In-Kind -- -- --
Other -- -- --

Prior Three Years Expense Allocations

Fiscal Year 2015 2014 2013
Program Expense $496,846 $592,182 $278,872
Administration Expense $86,412 $72,131 $55,432
Fundraising Expense -- -- --
Payments to Affiliates -- -- --
Total Revenue/Total Expenses 0.94 1.13 1.35
Program Expense/Total Expenses 85% 89% 83%
Fundraising Expense/Contributed Revenue 0% 0% 0%

Prior Three Years Assets and Liabilities

Fiscal Year 2015 2014 2013
Total Assets $503,744 $533,679 $446,426
Current Assets $503,744 $527,071 $446,426
Long-Term Liabilities $0 $0 $0
Current Liabilities $3,324 $1,047 $3,303
Total Net Assets $500,420 $532,632 $443,123

Prior Three Years Top Three Funding Sources

Fiscal Year 2015 2014 2013
1st (Source and Amount) -- --
-- --
-- --
2nd (Source and Amount) -- --
-- --
-- --
3rd (Source and Amount) -- --
-- --
-- --

Financial Planning

Endowment Value --
Spending Policy --
Percentage(If selected) --
Credit Line No
Reserve Fund Yes
How many months does reserve cover? 12.00

Capital Campaign

Are you currently in a Capital Campaign? No
Capital Campaign Purpose --
Campaign Goal --
Capital Campaign Dates -
Capital Campaign Raised-to-Date Amount --
Capital Campaign Anticipated in Next 5 Years? --

Short Term Solvency

Fiscal Year 2015 2014 2013
Current Ratio: Current Assets/Current Liabilities 151.55 503.41 135.16

Long Term Solvency

Fiscal Year 2015 2014 2013
Long-term Liabilities/Total Assets 0% 0% 0%

CEO/Executive Director/Board Comments

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Foundation Comments

Financial summary data in the charts and graphs above are per the organization's IRS Form 990s. Contributions from foundations and corporations are listed under individuals when the breakout was not available.

Documents


Other Documents

No Other Documents currently available.

Impact

The Impact tab is a section on the Giving Common added in October 2013; as such the majority of nonprofits have not yet had the chance to complete this voluntary section. The purpose of the Impact section is to ask five deceptively simple questions that require reflection and promote communication about what really matters – results. The goal is to encourage strategic thinking about how a nonprofit will achieve its goals. The following Impact questions are being completed by nonprofits slowly, thoughtfully and at the right time for their respective organizations to ensure the most accurate information possible.


1. What is your organization aiming to accomplish?

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2. What are your strategies for making this happen?

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3. What are your organization’s capabilities for doing this?

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4. How will your organization know if you are making progress?

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5. What have and haven’t you accomplished so far?

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