Message from the Executive Director
I have enjoyed almost 4 years as the FACES Executive Director and feel completely motivated and inspired by our volunteers, donors and physicians every day. The FACES team – Luis Valero, Associate Director, Marisa Maltese, Event Manager, Rebecca Kornstein, Project Coordinator, Heather Krol Coordinator of our FACES Apartments, and Camp/College Scholarship Programs, and Peggy Guinnessey Manager of our Parent Network are committed to the organization’s mission and continue to strategize innovative ways to raise awareness and funds.
FACES supports the tremendous work of the medical team here at the Comprehensive Epilepsy Center at NYU Langone Medical Center. Ongoing research initiatives, clinical trials and patient support are paving the way to a cure.
On Monday, March 7, 2016, FACES celebrated our annual Gala at Chelsea Piers in Manhattan. Harrison Ford, screen legend, humanitarian and environmental advocate, served as Gala Chair and Laura Crandall, co-founder and executive director of The SUDC (Sudden Unexplained Death in Childhood) Foundation, and director of NYU Langone Medical Center’s SUDC Registry and Research Collaborative was our honoree. The inconceivable loss of her 15-month old daughter in 1997 ignited a personal crusade to help others. She embarked on a journey that ultimately led to the Sudden Unexpected Death Data Enhancement and Awareness Act (H.R. 669), which was signed into law by President Obama in 2014. Laura’s work has been important for epilepsy, because a third of SUDC cases have a history of febrile seizure.
Melisa and Josh Fluhr served as the Auction Chairs and C. Hugh Hildesley served as the emcee and auctioneer. Over $5.4M was raised and funds from the evening provide for life-enhancing programs in cutting-edge research, clinical care, education and awareness programs, and community building events. The gala was filled with inspiring highlights, but perhaps one that stands out the most were words from Harrison Ford about his daughter, Georgia, “When you have a loved one who suffers from this disease, it can be devastating. You know how it affects their lives, their future, their opportunities and you want desperately to find mitigation. You want to find a way that they can live a comfortable and effective life. Dr. Orrin Devinsky, who is a dear friend, made the diagnosis: epilepsy. He prescribed the right medication and therapy; she has not had a seizure in eight years.” Bidding was feverish on both the live and online auctions which raised close to $1.3M along with the live appeal. This reflected a 47% increase from the previous year!!!! A special thank you to everyone who contributed towards the success of the evening.
TeamFACES was born in November 2013, when 6 runners raised over $67,000 for the NYC Marathon. We continued the athletic spirit in November 2015 for the marathon and March 2016 for the NYC half-marathon, with 17 runners raising $100,000. We now have spots available for the NYC triathalon on July 24th as well.
The arrival of spring also brought the Epilepsy Conference on Sunday, April 10, 2016 at NYU Langone Medical Center. Over 250 patients, caregivers, parents and medical professionals attended to learn about the latest developments in the epilepsy field.
The FACES Apartments program is provided “cost-free” to families who travel from far away to receive epilepsy treatment at NYU Langone Medical Center. Year round, two standard rooms are available for occupancy at the Affinia Shelburne Hotel located on 37th Street and Lexington Avenue. This hotel is conveniently located within walking distance to NYULMC. Requests for accommodations are awarded on a first-come, first-serve basis. Priority is based on financial necessity and medical severity. Furthermore, only 1 room per family is granted. In case there is no availability, families will be referred to the NYU Hospitality Hotline at 212-263-2092, where they may be able to secure hotel accommodations at a discounted rate. In 2015, FACES was able to serve: 86 families from 27 states and 4 countries Length of stay ranged from 1 day to 10 weeks and we used a total of 572 room nights.
Once again, FACES is happy to extend an opportunity for children to attend summer camp through the Dr. Blanca Vazquez Scholarship. Young people who deal with the daily challenges of living with epilepsy will have a wonderful opportunity to make new friends and have some fun in the sun. Applications are being accepted through June 3, 2016. We are also excited to continue with last year’s new programs - the FACES College Scholarship Program and the FACES Teen Program. We are delighted to provide financial support for college and graduate students affected by epilepsy and are accepting applications through May 6, 2016. Back by popular demand, FACES will kick-off their Teen Program on June 18th with painting party at the hospital. Don’t forget to hold the date for Game Day, which will take place on Saturday, October 22, 2016. Watch for more information during the summer.
The fall will bring a new set of Peace of Mind lectures – and we would love to hear from you regarding the topics that interest you the most.
Check out our Facebook page and Twitter feed for new postings about current events and information that involves the epilepsy community. Our Facebook page is www.facebook.com/FACESfriends. Our Twitter page is www.twitter.com/nyuFACES. Continue to watch your inbox for the FACES monthly e-newsletter, insight. In addition to FACES news and community updates, there will also be exciting highlights in each monthly edition. Our annual newsletter is already filling up with stories and updates. We are always looking for content so if you have a story to share, please let us know. A hard copy will be mailed to our community in July.
Finally – SAVE THE DATE for our annual freshFACES event on Thursday, October 6, 2016 at Current – the new event venue at Chelsea Piers. Information on ticket sales will be made available in the coming months. This is the third year we will be hosting this event, which has raised close to $250,000 to date..
The FACES team is always here to be of assistance. Please do not hesitate to contact us.