We’ve had a wonderful time at the 2025 MDA Clinical & Scientific Conference! It was incredible to meet with and learn from so many clinicians, researchers, pharmaceutical companies, and other patients advocacy groups just like us. Thank you to MDA CEO, Donald S. Wood for stopping by our table to learn more about MitoAction!
MitoAction
慈善
Boston，MA 606 位关注者
Improving the quality of life for the mitochondrial disease patient community through support, education and advocacy.
关于我们
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. MitoAction’s mission is to improve the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, clinical research initiatives and by granting wishes for children affected by mitochondrial disease. To do this, MitoAction’s goals include: *To improve quality of life for adults and children affected by mitochondrial disease. *To internationally raise awareness about mitochondrial disorders, and their relationship to other diseases. *To provide specific and practical materials that help patients to manage their symptoms *To aggregate and connect the international mitochondrial disease community *To engage pharmaceutical industry working toward therapeutic approaches to mitochondrial disorders. *To create tools which empower patients and caregivers to be advocates for themselves or their children. *To create unique experiential opportunities for adults and children affected by mitochondrial disease. We strive to offer comprehensive, up-to-date, expert resources, information, and support at no cost to any patient, family, clinician, educator, or member of the community. We continue to seek multiple ways to offer information such that the resources are accessible and user-friendly for people of all abilities. We foster relationships with the scientific, academic, research and business community in order to create sustainable support for the mission of MitoAction.
- 网站
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https://www.mitoaction.org
MitoAction的外部链接
- 所属行业
- 慈善
- 规模
- 2-10 人
- 总部
- Boston，MA
- 类型
- 非营利机构
- 创立
- 2005
地点
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主要
获取路线
US，MA，Boston
MitoAction员工
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Paul Harty
Chief Solutions Officer at Sevenstep
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Hilary Romkey
Master of multitasking, Mama to twins + one, Director of Programs and Special Events, MitoAction
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Jessica Shriver
Patient Advocate, Member Board of Directors at Rare New England
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Emily Grandahl
Marketing Coordinator at MitoAction | Merrimack College, Master's of Marketing Management
动态
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CALL TO ACTION! As early as tomorrow, the House will vote on a Continuing Resolution for FY25 funding. At the request of the Department of Defense, this would reduce the Congressionally Directed Medical Research Programs (CDMRP) by $859 million, or 57%! Cuts of this magnitude would significantly impact and disrupt research into new therapies for rare diseases and disorders including mitochondrial disease. A vote for this legislation is a vote to cut federally funded medical research for our community. Contact your representative to vote “NO” and instead approve a full-year FY25 Defense Appropriations Act that fully funds CDMRP. Click the link to contact your representative today! https://buff.ly/D5NMlzA
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Thank you Dr. Sahai! To close out Rare Disease Day, Tasia Rechisky is giving a shoutout to the wonderful Dr. Inderneel Sahai. Tasia and all of us here at MitoAction are so thankful to have Dr. Sahai as a part of our mito and FAOD community. Thank you for all you do! #RareDiseaseDay https://buff.ly/2FCyHGs
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Thank you Dr. Gillingham! LCHADD mom Stephanie Harry is thanking Dr. Melanie Gillingham and her team at OHSU for the amazing care she has provided for her son Christopher. Dr. Gillingham and her team made Stephanie and her son feel so welcome and comfortable while they were visiting of their clinical study. From all of us here at MitoAction, we thank Dr. Gillingham for continuing to be a vital member of our community! #RareDiseaseDay https://buff.ly/3EUxoFu
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Thank you Dr. Vockley! Ali Hamadeh is giving Dr. Jerry Vockley from UPMC a shoutout for Rare Disease Day today. Thank you Dr. Vockley for not only providing Ali with the best care, but also for getting him involved on the research side of these studies to help him expand his knowledge and further his career. #RareDiseaseDay https://buff.ly/3EUxoFu
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Thank you Dr. Walker! For Rare Disease Day, mito mom Suzann Leone is thanking Dr. Melissa Walker from Mass General for the amazing care she has provided her son over the years, and the way she never fails to make her feel included and informed at their visits. Thank you Dr. Walker for being such an incredible part of our community! #RareDiseaseDay https://buff.ly/2FCyHGs
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Thank you Dr. Regier! Amy and Landen Calvert want to give Dr. Debra Regier from Children’s National in Washington DC a huge shoutout and thank you for all she has done for them on Landen’s journey with LCHADD. Thank you for all you do for the mito community! #RareDiseaseDay https://buff.ly/2FCyHGs
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Thank you Dr. Goldstein! Rachel Wilson is thanking Dr. Amy Goldstein from CHOP for the way she treats her patients with love and respect, and how she is constantly working to make a difference in the lives of those with mitochondrial disease. Thank you for all you do for our community! https://buff.ly/2FCyHGs
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Thank you Dr. Parikh! Marcy Young is giving Dr. Sumit Parikh from the Cleveland Clinic a shout out for Rare Disease Day. Marcy and the MitoAction team want to thank you for always having your patient’s backs, being there to support them, and always working to get them the latest trials and studies! https://buff.ly/2FCyHGs
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Thank you Dr. Booth! For Rare Disease Day tomorrow, Carmen Dominguez is thanking her cardiologist, Dr. Karen Booth from Kaiser Permanente, for the amazing care she provides. We want to thank all of the wonderful clinicians in our community, not just our mito specialists. The cardiologists, neurologists, pediatricians, and everyone on our care teams play a vital role in providing our mito patients with the best care. Thank you from all of us at MitoAction! https://buff.ly/2FCyHGs