Giving Tuesday is just 2 weeks away! Help us make dreams come true for mito kids this holiday season. Your generosity gives the gift of hope to kids and families who need it most. Click the link and visit our website to learn more and see how you can support us this Giving Tuesday! https://buff.ly/4f6MwNi
MitoAction
慈善
Boston，MA 579 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 | Recent Graduate of Merrimack College, Master's of Marketing Management | Division I Athlete
动态
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SAVE THE DATE! Our 2025 Mito Town Meeting will be on Friday, January 10th! The annual mito town meeting is our way of kicking off the new year by sharing all that we have in store for the next 12 months! Join us to hear from organizations and companies around the world that have special opportunities, programs, and projects for patients and families affected by?mito. Registration coming soon! https://buff.ly/4fnIMqU
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SAVE THE DATE! Join us on Saturday, May 3, 2025, for Boston's premier Kentucky Derby event: the Sandra K. Russell Derby Day Benefit for Mito! Together, let’s enjoy an unforgettable day of excitement, purpose, and community while raising crucial funds to support MitoAction's programs that uplift, empower, and advocate for the mitochondrial disease community. Don’t miss the opportunity to make a meaningful impact—and enjoy a fabulous day of auctions, hats and bowties, mint juleps, and a live broadcast of the most exciting two minutes in sports. Stay tuned for updates on registration, location, and sponsorship opportunities. Let’s make this Derby Day one to remember! https://buff.ly/3SJ2Hbk
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We are thrilled to have CEO Kira Mann and Board Member John Kelly representing MitoAction at the 2024 #NORDSummit in Washington, D.C.! “Together, we can advance equity and innovation for the more than 30 million Americans – and more than 400 million people worldwide – with rare diseases!” -NORD https://buff.ly/4dT4eSU
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We are thrilled to be a part of the Patient Advocacy Pavilion at #NORDSummit !!
If you haven't explored the wonderful exhibitors in our #NORDSummit Patient Advocacy Pavilion, go check them out! Thank you to these nonprofits and NORD #RareDisease Centers of Excellence for the work they do: Children's National Hospital Adrenal Insufficiency United Facial Pain Association Foundation for the National Institutes of Health Foundation to Fight H-abc HypoPARAthyroidism Association International Waldenstrom's Macroglobulinemia Foundation (IWMF) KBG Foundation Maternal Alloimmunization Foundation MitoAction National Cancer Institute (NCI) PALS SkyHope Platelet Disorder Support Association - PDSA Rosenau Family Research Foundation Triage Cancer United Leukodystrophy Foundation United Mitochondrial Disease Foundation Uplifting Athletes
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MitoAction转发了
Vice President, Government Affairs and Strategic Engagement at PCSI - Professional Contract Services, Inc
"Alone we are rare. Together we are strong." This powerful tagline from the National Organization for Rare Disorders couldn’t ring more true as I join over 900 passionate advocates, experts, leaders, and those with lived experience at this week’s NORD National Summit. I’m thrilled to represent MitoAction as a board member alongside our incredible CEO, Kira Mann, as we work together to advance awareness and support for those living with rare diseases. Exciting and important conversations ahead! #NORDSummit #RareDiseases #MitoAction #PCSI
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MitoAction is honored to have joined the Barth syndrome Foundation in D.C. at the October 10th FDA Advisory Committee Meeting. This meeting was for further review of elamipretide, a treatment for the mitochondrial disease, Barth syndrome. As a non-profit focused on awareness, education, and support, MitoAction’s role was to support the families and patients presenting their positive results while using elamipretide to help the FDA understand the tremendous impact this therapy has had for the Barth syndrome patients. The meeting started and ended with scientists and analysts reporting for or against the continuation of the drug. At approximately 5 ? hours into the meeting the patients and families were allowed 4 minutes to share their experiences. We believe that the patient testimonies were critical to a positive outcome of continuation. If you’d like to hear some of the patients present their case it can be found on this link at around hour 5:55 in the recording. https://lnkd.in/gGb8CNDV We are so honored to support the Barth syndrome Foundation and the families. We are grateful to the Cardiovascular and Renal Drugs Advisory Committee voting in favor of elamipretide as an effective therapy for Barth syndrome. There are many variations of #mitochondrial disease, so any small advancement for one rare disease is critical to the advancement of others. Big win for the Barth syndrome families, and big win for mitochondrial and all rare disease. #mitochondrialdisease #barthsyndrome #FDAadcomm #advocacy #mitoawareness
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Use the links below to virtually join the FDA Advisory Committee meeting tomorrow! If you can't be there all day, we encourage you to join for the Open Public Hearing portion of the meeting from 1:15 PM - 2:15 PM. The Committee will discuss the new drug application for elamipretide, a treatment for Barth Syndrome. Spread the word by sharing these links for others to join! Watch Live: https://buff.ly/3BzVMe6 More information: https://buff.ly/4eWge7f
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