Le Lézard
Classified in: Health
Subjects: NPT, CHI

HopeForMarian.org Joins the Global #GivingTuesday Movement


LOS ANGELES, Nov. 28, 2017 /PRNewswire-USNewswire/ -- Today, HopeForMarian.org has joined #GivingTuesday, a global day of giving that harnesses the collective power of individuals, communities and organizations to encourage philanthropy and to celebrate generosity worldwide. Committed to drive awareness for Niemann-Pick Type C (sometimes called NPC), HopeForMarian.org is donating funds to the Ara Parseghian Medical Research Fund, directly fueling critical scientific research that is nearing a cure for NPC.

#GivingTuesday is held annually on the Tuesday after Thanksgiving (in the US) and the widely recognized shopping events Black Friday and Cyber Monday to kick off the holiday giving season and inspire people to collaborate in improving their local communities and to give back in impactful ways.

The Ara Parseghian Medical Research Fund at Notre Dame is named after Ara Parseghian, the much beloved and two-time national championship Notre Dame football coach, whose three youngest grandchildren succumbed to NPC at a young age.  

"For years it has been the hope of Ara Parseghian, the Parseghian family and all families affected by NPC disease to find a treatment or cure," said Sean Kassen, the director to the Fund. "With the support of the community and the dedication of so many, that hope is on the cusp of being a reality."

In addition, the Bill & Melinda Gates Foundation recently committed $50 million to dementia research, which will largely benefit Alzheimer's disease and may also benefit other rare diseases with dementia like NPC (a fatal disease with symptoms in children that are similar to Alzheimer's in adults).

Everyone is encouraged to support a Cure for NPC through donations to HopeForMarian.org, Ara Parseghian Medical Research Fund or to help spread awareness through the #Nopuckerchallenge, created by the McGlocklin family to drive awareness around NPC.

Those who are interested in racing towards a cure for Niemann-Pick Type C through the #GivingTuesday initiative can visit www.HopeForMarian.org.

About Marian
Two-year old Marian is currently one of the youngest patients on an experimental treatment, VTS-270, which slows the progression of NPC, giving her critical time to live. On the trial, Marian has shown incredible improvements since she started treatments: she is walking, talking, and reaching new milestones. This is not a cure, but it is buying time as doctors and researchers come ever closer to breaking through to a cure. You can follow and find out more about Marian's story at HopeForMarian.org. To help spread awareness about Niemann Pick Type-C, we encourage everyone to take the #NoPuckerChallenge and share with friends.

All money raised through HopeForMarian.org directly supports the research efforts of Support of Accelerated Research for NPC (SOAR) and the Ara Parseghian Medical Research Fund at Notre Dame (APMRF).

About HopeForMarian.org
Hope for Marian has an application pending for 501(c)(3) status as a charitable organization intent on finding a cure for NPC. Our tax identification number is 82-2329864. Every dollar raised will go to find a cure.

About #GivingTuesday
#GivingTuesday is a global giving movement that has been built by individuals, families, organizations, businesses and communities in all 50 states and in countries around the world. #GivingTuesday harnesses the collective power of a unique blend of partners to transform how people think about, talk about, and participate in the giving season. It inspires people to take collective action to improve their communities, give back in better, smarter ways to the charities and causes they believe in, and help create a better world. #GivingTuesday demonstrates how every act of generosity counts, and that they mean even more when we give together.

Contact:
Ronjini Joshua
HopeForMarian.org
[email protected]
562-241-1668

SOURCE HopeForMarian.org


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