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Staff and Leadership Volunteers

Meet the staff and our Leadership Volunteers: people committed to improving the everyday lives of those affected by mitochondrial disease!

MitoAction Staff Members

Kira Mann, Chief Executive Officer
Kira brings with her over 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 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 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,” Kira said. You can reach Kira at Kira@mitoaction.org.

MaryBeth Hollinger, 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."MaryBeth can be reached at mito411@mitoaction.org.

 Ginger DeShaney, Director of Operations and Communications

Ginger DeShaney oversees Mito Socials and Restaurant Nights, patient outreach (including sending awareness and educational materials), camper and scholarship outreach, and day-to-day operations. She will also continue to highlight our patient community in our Patient Spotlights. If you know of an inspiring patient for a story, need materials to raise awareness, want to host a Social, or don’t know where to start on your journey, please reach out to her at support@mitoaction.org.

Shawney Lamm, Director of Special Events and Fundraising

Shawney Lamm leads the charge for our signature events: the MitoAction Energy Walk & 5K and our Derby Day Benefits for Mito. Shawney looks forward to working with the community to launch events across the country to increase awareness of mitochondrial disease and raise funds to support the programs and services we provide. If you are interested in hosting an event, volunteering, or have ideas, please contact Shawney at shawney@mitoaction.org.

Kristi Wees, Mito-Autism Task Force

Kristi Wees is Chief Patient Advocacy Officer of Empowered Medical Advocacy. For MitoAction, she leads the quarterly Mito-autism conference calls, helps with contacting speakers for the Monthly Mito Expert Series, and fills in occasionally as moderator of the Friday support group calls. Kristi received her bachelor's degree in chemistry from The Pennsylvania State University, where she was one of the inaugural graduates of the Schreyer’s Honors College. She went on to complete her masters degree studies at UCLA in Chemistry. Utilizing her extensive industrial, academic and research experience, as well as, hands-on medical and clinical know-how, Kristi navigated her own daughter’s medical journey back to restored health. Through this process, Kristi became a passionate advocate for all children no matter what the diagnosis and all of her work is founded on the belief that every family deserves the best quality of life together with their child.

Leadership Volunteers

Wendy Helmka, M.S., P.T., Adult Advocacy

Wendy Helmka is a medically retired physical therapist and administrator with 20 years of experience in healthcare. She has worked in the hospital, nursing home, home health, sports-medicine, and private practice settings. Wendy helped facilitate Hockey North, the Detroit RedWings’ training and prospect camp, from 1998-2002. Wendy was very healthy and athletic before she was diagnosed with an adult-onset mitochondrial disease. She received a formal mitochondrial diagnosis after a muscle biopsy in 2006. She has a Respiratory Chain COX Defect Complex IV.  She believes strongly in having an advanced directive and clinical care coordination plan for accessing Emergency Department when medically compromised.  Upon onset of her illness, when she was unable to communicate for herself, designated advocates were able to coordinate her care legally because of these documents.  Wendy is uniquely qualified to help adults as her prior level of function, expertise as a Physical Therapist and then subsequent experience as a patient lends to greater empathy and credibility. Wendy has been active with MitoAction since 2007. She has served as Mito411 volunteer, attends tele-support groups and has been co-chair of Adult Advocacy since 2007. A resident of Michigan, Wendy attended the MitoAction Walk at Castle Island in 2011 representing adults around the world.

Jean Shepherd, Adult Advocacy

Jean Shepherd is from British Columbia, Canada.  She is an old-timer Mito patient, and a Mito mom of now middle-aged identical twins … one of whom also has a diagnosis of Mito.  She was caregiver to her mom who, although never officially diagnosed, most likely had Mito also.  Jean taught deaf children both in a school for the deaf environment and in a public school environment where she used innovative ideas to integrate deaf children into a regular classroom by team teaching and teaching all the “hearing children” sign language.  All teaching was done using sign language and oral language together.  Jean has been surrounded by deafness all her life and she has used her ability to break the concepts of mitochondrial disease into simple pictorial language during the close to 20 years in which Jean has moderated adult support groups.

Ashley Denise Johnson, Support Groups

Ashley is an adult Mito patient with defects in complexes I and III. She struggled since she was old enough to talk to get her diagnosis and find doctors, or anyone, who would listen to figure out what was causing her progressively ill health. At 22 she finally got her diagnosis and was able to accept why her body was failing her. She started researching Mito exhaustively and threw herself into making people aware this poorly understood and underdiagnosed disease in the hopes that others will not have to go through the nightmare of misdiagnosis and false blame. Ashley is very thankful for the wonderful support of the MitoAction community and her supportive fiancé, Tony, who has made the last eight years of this Mito journey bearable and brings so much joy to her life. She currently lives in Atlanta, GA with Tony and their canine baby, Olive, whom is adopted and does not suffer from any inborn errors of metabolism.

 Anita Orpitz, Memories Group

Anita grew up in Germany and studied languages. She is fluent in German, English, French and Spanish. She moved to France in 1999. In May 2001, her daughter Caroline was born. The family moved to Concord, MA in November 2002. Caroline got diagnosed with diabetes in July 2004 and mitochondrial disease, Kearns Sayre Syndrome, in December 2006. Her brother, Gabriel, was born in September 2004. Anita stayed at home between 2001 and 2008 to take care of her children. In 2008, she started working part time from home as a translator and proofreader. In 2010, the family hired an au pair, which allowed Anita to go back to work full time. She has been working in Customer Service, Inside Sales and Marketing in the health care industry since. At age 10, in September 2011, Caroline lost her battle with mitochondrial disease. She was a very brave girl who laughed a lot, made other people laugh, and never complained. Anita returned to Germany for five months between August and December 2013. She moved back to the United States and currently lives with her son, Gabriel, and their dog, Ariel, in Concord, MA.

Kirsten Jo Casale, School Advocacy
Kirsten Casale is a mother of two young adults with mitochondrial disease. She has been an at-home mom for 22 years, and has been advocating for children for the past 18 years. Over the past five yearsshe has established and written the education and advocacy section for MitoAction's website. Her desire to ease the tensions that often occur between school systems and families is what motivates her to continue to develop tools and materials that will properly support a child with Mito who is either attending school full or part time or being home schooled. In 2007, Kirsten petitioned the state of Rhode Island to recognize "Mitochondrial Disease Awareness Week." Then-Governor Donald L. Carcieri declared as a gubernatorial proclamation that "Mitochondrial Disease Awareness Week" would be recognized for the first time in Rhode Island. Prior to joining MitoAction, Kirsten taught, volunteered, and supported special education programs, and managed a law firm and a dental firm. She holds her dental assisting certificate and has worked as a licensed Emergency Medical Technician. As an avid advocate for educational success for Mito children, Kirsten attends Board of Regents hearings, teleconferences in order to advocate and support the needs of children with Mito during school IEP//504 meetings, attends special education support groups and conferences nationally to better understand what has to be conveyed so that all children with mitochondrial disease will have proper access and accommodations/modifications to academic curriculum's that will allow children with mitochondrial disease to succeed educationally.