MAY 2013 FACES E-NEWSLETTER
- Senate Bill for SUDEP Passes in Illinois
- A New Friend for Life
- The Purple Spoon
- "Autistic Teen Leader Wows Me at NYU Gala"
- Jacqueline French, MD receives 2013 Hero of Epilepsy Award
- Oliver Sacks, MD Shares Tales of Musical Hallucinations
- El Diario honors Dr. Blanca Vazquez as an Outstanding Woman for 2013
- Walking and Talking about Epilepsy in Washington DC
- Fundraising Corner
1. SENATE BILL FOR SUDEP PASSES IN ILLINOIS
We're pleased to share that Illinois Senate Bill 1226 passed unanimously through the Illinois Senate on April 24, 2013, by a 52-0 vote! The law provides that there be an inquiry about a history of epilepsy or seizures as a part of an autopsy; and that if the cause of death is determined to be Sudden Unexpected Death in Epilepsy (SUDEP), the death certificate must be forwarded to a national SUDEP registry within 30 days.
This is the first Bill of its kind! PLEASE CLICK HERE TO READ MORE
2. A NEW FRIEND FOR LIFE
FACES philantropist, Lannie Lipson helps enrich the life of a child living with epilepsy by sponsoring a seizure assistance dog. The family writes:
“Because of you, our future will be changed forever. Our daughter’s future will be changed forever. After hearing what you have done, it has helped me realize that there are still people out there who are as loving, willing and as giving as our family is”
STAY TUNED FOR THE FULL STORY IN OUR ANNUAL PRINTED NEWSLETTER COMING JUNE 2013!
3. THE PURPLE SPOON
By: Dara Tannariello
This is a great ketogenic diet recipe that can be used as a meal or a snack. It is a sweet treat, high in fat and protein and calculated to be a 3:1 ratio for our ketogenic dieters. To modify this recipe to your child’s calorie level or ratio, speak with the dietitian who can easily adjust the proportion and fat to meet your child’s needs.
Spotlight on Eggs:
Eggs often get a bad reputation due to the yolk’s high concentration of dietary cholesterol. However, in moderation, eggs can be part of a healthy diet. Eggs contain a tremendous amount of protein as well as vitamins and minerals.
Biotin is a B vitamin that is present in the yolk of the egg. One cooked egg yolk contains nearly 100% of your daily recommended intake of Biotin. Biotin is necessary to maintain a healthy metabolism and healthy blood sugar levels. It also supports hair and nail growth and health. Eggs are also high in a carotenoid called Lutein. Lutein is a vitamin most commonly known for its ability to support eye health. It is nicknamed “the eye vitamin” because it is known to prevent many eye diseases such as macular degeneration (AMD), cataracts, and retinitis pigmentosa. Lutein is known to protect eye tissues from daily sun damage.
170g egg yolks (about 7 egg yolks)
12g Truvia® (about 2 Tbsp)
280g heavy cream (measure, then whip to stiff peaks) (about 1 1/6 cups)
7g pure vanilla extract (about ½ Tbsp)
- Fill a large saucepan with several inches of water, and bring to a boil over high heat. Reduce the heat until the water maintains a strong simmer. Place the egg yolks, sugar, and vanilla in a metal mixing bowl. Place the bowl over simmering water. Beat constantly with a wire whisk until the zabaglione turns pale yellow and thickens to the consistency of softly whipped cream. Scrape the zabaglione into a clean mixing bowl, set over ice, stirring occasionally until cold. Once cold, fold in the whipped cream.
- For lower ratios or modified atkins, once the zabaglione is complete, you are free to top it over a small amount of fruit.
- Store leftovers in the fridge for no longer than 24 hours.
Nutritional Information :
Makes: 5 (300 calorie) servings or 10 (150 calorie) servings for a snack size
Per 300 calorie serving:
Carbs: 3.18 g
Protein: 6.4 g
Total time for cooking and preparation: 30 minutes
4. "AUTISTIC TEEN LEADER WOWS ME AT NYU GALA"
Jim Luce writes his experience in the Huffington Post on April 16 for attending the FACES Gala 2013 and meeting FACES friend, Joey Lowenstein.
5. Jacqueline French, MD receives 2013 Hero of Epilepsy Award
Jacqueline French, MD received Epilepsy Foundation of America's 2013 Hero of Epilepsy Award.
6. Oliver Sacks, MD Shares Tales of Musical Hallucinations
7. FACES congratulates Dr. Blanca Vazquez on being honred by El Diario as an Outstanding Woman for 2013!
8. WALKING AND TALKING ABOUT EPILEPSY IN WASHINGTON DC
By: Rachel Jurd, PhD (Research Scientist)
The cherry blossoms were still in bloom at the Washington Monument grounds for the Epilepsy Foundation’s annual National Walk for Epilepsy on April 20th. Thousands of people joined the three-mile walk in support of those who face the challenges of living with epilepsy and to drive funding that will accelerate therapeutic advancement and grow awareness of this chronic disorder. Over $900,000 was raised by hundreds of teams who participated in the walk, including an NYU FACES team, lead by Dr. Jacqueline French. Thank you to everyone who sponsored our team and helped to support this important fundraising event.
Dr. French also participated in the “Ask the Experts” session after the walk (see photo to the right). This session provided a great opportunity for people living with epilepsy and their families to ask questions about the disorder. Some of the issues raised in this session included how to find out about participating in epilepsy clinical trials, how to best support a sibling with epilepsy, and the importance of recognizing and treating mood disorders associated with epilepsy.
Another event that took place in Washington during this same week was the Curing The Epilepsies 2013: Pathways Forward meeting. This conference brought together researchers, clinicians, patients, family members and advocacy groups to discuss the progress that has been made in understanding underlying mechanisms that lead to seizures and epilepsy disorders, as well as to discuss future directions that are needed to continue to improve treatment options and to ultimately find a cure. Dr. French and Dr. Ruben Kuzniecky from the NYU Epilepsy Center were invited to speak at this event. Dr. French spoke about past and ongoing clinical trials, while Dr. Kuzniecky discussed recent advancements in the use of imaging to detect brain lesions in epilepsy disorders. The meeting was organized by the National Institute of Neurological Disorders and Stroke (NINDS) in collaboration with research and volunteer organizations (including FACES, CURE, Epilepsy Foundation, Epilepsy Therapy Development, International League Against Epilepsy, American Epilepsy Society, National Association of Epilepsy Centers, Tuberous Sclerosis Alliance, and Vision 2020). A main outcome of the conference will be to update the Epilepsy Research Benchmarks, which will help guide research directions and funding priorities in the coming years. Video presentations from all speakers are available online and are free to view. PLEASE CLICK HERE
9. FUNDRAISING CORNER
Samantha with her dog Jack.
FACES friend Samantha Mongan (pictured here with her dog Jack) really wanted to do something special for pediatric patients who receive treatment at the NYU Comprehensive Epilepsy Center. After brainstorming some ideas, she decided to make goody bags stuffed with toys to make doctor’s visits more fun and less scary. They are a HIT here and Samantha is already making more. Samantha has a blast making these goodie bags. “Knowing that other kids love them makes my smile widen!”
Top left: Orrin Devinsky, MD and Katie Hauck.
The 6 donation cups are being used to
spread awareness of epilepsy and
raise funds for research.
MEET KATIE HAUCK
Meet FACES Friend, Katie Hauck, an amazing young woman determined to spread epilepsy awareness in her community. Katie recounts, "I was at the store, Jabberwocky, where my sister works and I saw a donation cup for Relay for Life and I asked if I could put one there for epilepsy. They said yes! So, I decided to invite my friend, Ashley, over and we made six cups that said 'Epilepsy - please research and help us tell the world'. We are going to place them in local stores. I really want to do more to help kids in need."
tDCS for Memory Difficulty in Temporal Lobe Epilepsy
Memory difficulty ranks among the most common complaints for patients with temporal lobe epilepsy. While these cognitive problems may affect quality of life more than seizure frequency, no effective therapy exists. Transcranial Direct Current Stimulation (tDCS) is a method of safe, noninvasive, and painless brain stimulation delivering low intensity direct current through scalp electrodes to modulate brain activity. Several recently published studies demonstrate the enhancement of working memory and mood with stimulation of the frontal region of the brain. Furthermore, tDCS has never been reported to have induced a seizure. The aim of our study is to determine whether real tDCS can improve memory function and mood. We are enrolling patients with well-controlled temporal lobe epilepsy who have not undergone brain surgery. For more information, please contact: Anli A. Liu MD MA firstname.lastname@example.org or at 646-558-0876.
EVENTS & PROGRAMS: SAVE THE DATES!
Register now for a live webinar entitled, "Preventing Sudden Unexplained Death in Epilepsy (SUDEP):
Wednesday, June 12, 2013
Join Daniel Friedman, MD (Assistant Professor of Neurology at our Comprehensive Epilepsy Center) and Dale Hesdorffer, PhD as they discuss the most current thinking on ways you can reduce the risk of SUDEP.
FACES is pleased to introduce a series of cost-free events in support of patients, caretakers and parents who are dealing with the daily challenges of epilepsy and seizures. Our Peace of Mind events are intended to provide education, tools and resources, insight and possibly a new perspective to a community who are the foundation of the FACES family.
More information coming soon!