CALIFORNIA FOCUS / Special Guests, Celebrities, and Parent Advocates to Support More Than 30 Rare Di
Global Genes® and Festival of Children Foundation Partner in Observance of World Rare Disease Day, February 28th, in San Francisco
Nicole Boice (left), Founder and CEO of Global Genes, and Madison McLaughlin, star of "Arrow" taking a ride on the King Arthur Carousel during the "Carousel of Possible Dreams" fundraiser for the Festival of Children Foundation at Disneyland in 2016. (Photo by Mark Eades, Orange County Register/SCNG)
ALISO VIEJO, Calif. (February 12, 2018) – Global Genes, a leading rare disease patient advocacy organization, and Festival of Children Foundation will co-host the inaugural RARE Carousel of Possible Dreams, Wednesday, February 28th, at the Children’s Creativity Museum’s historic LeRoy King Carousel in San Francisco. The event will raise awareness for rare disease, highlight the importance of collaborative efforts in creating positive impacts, and celebrate the monthlong fundraising efforts of over 30 rare disease organizations.
Two of Orange County’s most influential and philanthropic women, Nicole Boice, Founder and CEO of Global Genes, and Sandy Segerstrom Daniels, Executive Director of Festival of Children Foundation will proudly host the RARE Carousel of Possible Dreams. They welcome many of the highly anticipated special guests, celebrities, and rare disease advocates who plan to participate in the event.
In attendance will be Madison McLaughlin, actress from CW’s Arrow and Supernatural, and Global Genes ambassador and rare disease advocate. Madison will board the carousel in solidarity with the rare disease community, and in support of her three sisters who were diagnosed with HBSL, which affects the brain and spinal cord. Many celebrities will also take to social media to support the rare disease community and RARE Carousel of Possible Dreams.
Confirmed guest speakers include Quita Highsmith, Head of Alliance and Advocacy Relations at Genentech, and Caroline Lowey-Alton, Co-founder of KCNQ2 Alliance. Matt Wilsey, CEO of Grace Science Foundation, and NGLY1 Parent Advocate, is also expected to attend. Wilsey became a “rare disease hunter” and advocate after his daughter, Grace, was born with NGLY1 Deficiency. He has since funded nearly 75 scientists at 20 medical centers in five countries -- with the sole purpose of treating this disease.
The RARE Carousel of Possible Dreams will be presented in observance of World Rare Disease Day, Wednesday, February 28, from 6:00 p.m. - 8:30 p.m.at the Children’s Creativity Museum in San Francisco. The event celebrates the increasing role of patient advocates, and the importance of collaboration to drive change and create impact for patients and families whose lives have been touched by rare disease.
For more information, please visit globalgenes.org/SFWRDD.