There are many things that I am passionate about…beyond my music.
I think that everyone that is able to should donate blood! Before Will and Sasha started their gammaglobulin (product derived from blood) infusions, I had no idea just how many uses for blood there are.
I also am passionate about the Immune Deficiency Foundation as they have been astounding advocates for individuals with Primary Immunodeficiency Disease. There are many ways to help out – you can contact your legislator about the importance of proper access to life saving treatment, you can make a donation to support patient education and advocacy programs as well as research or you can help support local events in your area.
And of course, I am quite involved with the United Mitochondrial Disease Foundation. The UMDF has been an integral part of my journey and I love their mission, their desire to be “Part of the Cure” and their dedication to raising money not only for patient education/support, but for life saving research. There are many ways you can get involved with the UMDF. You can become a member, you can reach out to your local legislators and ask them to support funding for more research, you can make a donation, or you can support your local chapter or support a local event.
Team Hope was created by individuals whose lives are affected by Primary Immunodeficiency Disease (PIDD). Team Hope is dedicated to raising awareness, funding, and support for those with Primary Immunodeficiency Disease in the New England area. Team Hope proudly supports and works in conjunction with the Immune Deficiency Foundation and supports their vision of empowerment through education, advocacy, and the promise of a cure through raising funds for research. To date, Team Hope has raised nearly $50,000.00 in donations for IDF. Thank you to all of our generous donors!
Here are a few other things that I am pretty passionate about….
National Ataxia Foundation
The National Ataxia Foundation is dedicated to improving the lives of persons affected by ataxia through support, education, and research
The American Red Cross
Since its founding in 1881 by visionary leader Clara Barton, the American Red Cross has been the nation’s premier emergency response organization. As part of a worldwide movement that offers neutral humanitarian care to the victims of war, the American Red Cross distinguishes itself by also aiding victims of devastating natural disasters. Over the years, the organization has expanded its services, always with the aim of preventing and relieving suffering. Today, in addition to domestic disaster relief, the American Red Cross offers compassionate services in five other areas: community services that help the needy; support and comfort for military members and their families; the collection, processing and distribution of lifesaving blood and blood products; educational programs that promote health and safety; and international relief and development programs.
Children’s Hospital Boston
The vision of Children’s Hospital Boston is to advance pediatric care worldwide. They aim to provide the highest quality of health care, lead the way in research and discovery, educate the next generation of leaders in health care and enhance the health and well being of the children and families in the local community.
Merrimack Valley Hospice
Founded in 1980, Merrimack Valley Hospice provides nursing care, pain control and symptom management, personal care, grief and bereavement counseling and supportive services for patients nearing the end of life.
Virtual Medicine Practive
Dr. Frances Dougherty Kendall, who trained and was on staff at Boston Children’s Hospital plus Harvard Medical School for a number of years, was the previous 50% owner of a successful genetic laboratory/healthcare provider (Horizon Molecular Medicine) and currently serves on the Medical Advisory Board to MitoAction.org, has extensive experience in the diagnosis and management of children with a wide array of inborn errors of metabolism. She brings this vast experience to Virtual Medical Practice, LLC, as President and founder. Dr. Kendall is both a Pediatrician and Biochemical Geneticist. Dr. Kendall has authored numerous research articles on various rare diseases that include Nieman Pick Type C and mitochondrial disease and has a long term interest in research and clinical aspects of rare metabolic diseases.
The Hole in the Wall Gang Camp
Founded in 1988 by Paul Newman, The Hole in the Wall Gang Camp in Ashford, Connecticut, is a nonprofit, residential summer camp and year-round center serving children and their families coping with cancer and other serious illnesses and conditions. Through Camp programs, year-round outreach to hospitals and clinics, and ongoing services for children, families and caregivers, the Camp serves more than 15,000 annually. All of the Camp’s services are provided free of charge.
Mito-Kids is a documentary based on the lives of my 4 daughters (15-19) and how they live with their individual disorders caused by Mitochondria Disease.
Dare To Hope Foundation
The Ainsley Paige Higgins’ Dare To Hope Foundation, Inc. works to raise awareness and better the lives of children with rare diseases and/or complex medical conditions. Our services include procuring free or low-cost legal and advocacy assistance; furnishing medical supplies not covered by insurance; offering toys to brighten a child’s day; providing community resource referrals and coordination; and offering emotional support to families.
U.R. Our Hope
The mission of U.R. Our Hope is to serve individuals with undiagnosed and rare disorders through education, advocacy, and support in order to bring hope through knowledge, empowerment, and healing.
MitoAction’s Mission is to improve quality of life for adults and children affected by mitochondrial disease, internationally raise awareness about mitochondrial disorders, and their relationship to other diseases, provide specific and practical materials that help patients to manage their symptoms, aggregate and connect the international mitochondrial disease community, engage pharmaceutical industry working toward therapeutic approaches to mitochondrial disorders, and to create tools which empower patients and caregivers to be advocates for themselves or their children.
RMR Music was founded in 1993. RMR is a full service indie label, with an in-house studio. Artists working with RMR can take their songs from their first recordings to full distribution. RMR Music functions as a musician consortium, in which each band represented works together for common goals. All proceeds generated from the sale of songs and merchandise go directly to the bands/musicians involved. All the bands and RMR donate a percentage of their proceeds to charities of their choice.
Project: Cure has a vision to provide families or individuals in their time of need with an outlet (music) that they can relate to, gain strength and encouragement from, while also donating all of the proceeds to specific foundations: The Immune Deficiency Foundation, National Ataxia Foundation, and the United Mitochondrial Disease Foundation. Our goal as the series gains momentum is to put out annual compilations each supporting new charities (in addition to the current three) to raise funds and awareness of illnesses that many families are facing on a daily basis.
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