US Bank Stadium, Along with Landmarks Across the United States, Will Light up in Support of The Rare Disease Community
MINNEAPOLIS, MN. (February 24, 2020) — Since the creation of Rare Disease Day in 2008, it has been a time for the rare community to come together, find support, and shine a light on rare diseases across the globe. This year, the Yaya Foundation for 4H Leukodystrophy is lighting up US Bank Stadium in downtown Minneapolis as part of a national effort to “light up the world for Rare Disease Day!”
This concept originated in 2019 when the Empire State Building in New York City was striped in Rare Disease Day colors thanks to the work of the National Organization for Rare Disorder’s (NORD) Corporate Council. Since then, the images of many famous landmarks across the United States shining bright for Rare Disease Day have been an inspiration for many and has raised awareness of the over 7,000 rare diseases that collectively affect millions of Americans.
The Yaya Foundation is committed to supporting and accelerating efforts to find therapies and cures for 4H Leukodystrophy, a rare and devastating genetic neurological disorder that currently is without supporting therapies. By participating in the national observance for Rare Disease Day, the Foundation hopes to raise awareness of this devastating disease, its resilient community of patients and families and the role that a patient advocacy group can play, in fighting 4H or any rare disease.
“As the only organization in the world dedicated to fighting for patients and families affected by 4H Leukodystrophy, no one can match our passion or commitment to finding a cure,” said Ron Garber, Yaya Foundation co-Founder and President. “We, together with other patient organizations like us across the rare disease community, are working tirelessly to accelerate efforts to discover therapies and cures that will improve and lengthen the lives of millions of people affected by rare diseases.”
If you are interested in participating in this grassroots effort to Light Up For Rare – US Bank Stadium edition, there are multiple opportunities:
• Join our Facebook Live via the Yaya Foundation’s page, https://www.facebook.com/yayafoundation4HL, this Sunday February 28th at 5:30 pm CT
• After the event, the Yaya Foundation will share images to its Facebook page, https://www.facebook.com/yayafoundation4HL. Please share those posts and images to continue the celebration and to raise awareness of rare disease.
Beyond Rare Disease Day, there are many ways that anyone can support the rare community. Please consider that living with a rare disease can be isolating and that giving extra kindness can go a long way for families. Especially due to Covid-19, check in on your neighbors, friends and families who may be living with a rare disease to see if there is extra support you can lend. Consider volunteering or donating to your favorite rare disease patient advocacy group or foundation. And, finally, you can learn more about the more than 7,000 rare diseases affecting 30 million Americans at NORD’s website, https://rarediseases.org/.
About the Yaya Foundation for 4H Leukodystrophy
Co-Founded by three groups of parents of children with 4H Leukodystrophy, the Yaya Foundation is the only organization in the world dedicated to fighting for patients and families affected by 4H Leukodystrophy. It aims to create an eco-system that will advance efforts to find a therapy or cure for patients with 4H Leukodystrophy and to provide educational and emotional support to families. For more information, please visit www.yayafoundation4HL.org.
About Rare Disease Day®
Rare Disease Day® takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. It’s never too early to get involved!
The National Organization for Rare Disorders (NORD) is the official Sponsor of Rare Disease Day in the United States alongside our sister organization, EURORDIS (The European Organization for Rare Disorders), which organizes the official international campaign. To learn what’s happening around the world, visit the global Rare Disease Day website at rarediseaseday.org.
Rare Action Network, MN powered by NORD
The RareAction Network® (RAN) is pleased to support this event. RAN is the nation’s leading advocacy network working to improve the lives of the 30 million Americans living with a rare disease at the state level. RAN serves as a broad spectrum of stakeholders ranging from patients, to their families, caregivers, and friends; from researchers to industry; to physicians and academia. While working predominantly at the state level, the network will filter information up to NORD’s national federal policy team to help address issues of national concern. More information here: https://rareaction.org/get-involved/join-rare-action/