Hope is a Journey….

What I’m Passionate About

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.

Here are a few other things that I am pretty passionate about….

NORD

The National Organization for Rare Disorders (NORD) is the leading independent patient advocacy organization representing all individuals and families affected by rare diseases in the United States. Alongside a growing network of disease-specific member organizations, professional patient advocacy groups, and industry partners, NORD improves lives, empowers patients and caregivers, and provides the right information and resources at the right time.

From top to bottom, NORD is a tried-and-true champion and thought leader for the rare community, leading the charge to eliminate the struggle of rare diseases once and for all.

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.

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

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
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

Wonka Sound
Wonka Sound is a Pro Tools HD 3 facility that is designed to be as comfortable as it is professional. Whether you are recording rock, pop, hip-hop, folk, or anything in between – you will find a warm and relaxing environment to get your project finished with ease

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