November 2016

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NOVEMBER 2016 FACES E-NEWSLETTER

  1. RECIPE OF THE MONTH
  2. PUTTING FOR PURPLE
  3. LEMONADE STAND
  4. WHY I RUN
  5. RUNNING THE COAST FOR A CURE
  6. GABRIELS SUMMER VACATION
  7. ATTITUDES OF GRATITUDE
  8. NOTE WORTHY NEWS

1) RECIPE OF THE MONTH

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MEATLOAF AND GREENBEANS
A serving provides: ketogenic ratio: 3:1, calories kcal 633, 4.2 net carb grams, 16 protein grams, and fat 61.3

Ingredients:

  • 50g Wholesome 3.5:1 Bread by Keto Vie (1 roll)
  • 50g ground beef, 80%, raw (½ cup)
  • 6g egg, raw, mixed well (1 tsp.)
  • 10g canola oil (2 tsp.)
  • 0.5g garlic powder (¼ tsp.)
  • 0.2g oregano, dried (¼ tsp.)
  • 2g parsley, raw (2 tsp., chopped)
  • 0.2g basil, dried (¼ tsp.)
  • 12g heavy cream (1 Tbs)
  • 10g Ketchup, Walden Farms® SF (2 tsp.)
  • 20g butter (1 Tbs + 1 tsp.)
  • 40g green beans, cooked (¼ cup)

Directions:

Preheat oven to 400° F. Crumble thawed Wholesome 3.5:1 Bread by Keto Vie roll. Mix breadcrumbs, beef, egg, oil, garlic powder, oregano, parsley, basil and cream. Pat meat mixture into a ramekin. Bake for 15 minutes. Allow meatloaf to cool and all juices to be reabsorbed. Melt butter and top meatloaf with ketchup and approximately half of butter. Serve green beans and remaining butter on the side.

This recipe has been provided from Keto Vie Café

Be sure to check this recipe and consult with your dietitian for any modifications. Ketogenic diets are highly individualized treatments and this recipe should only be used as a guide.

2) PUTTING FOR PURPLE

By: Melanie Harmon

Our 3rd Annual Putting for Purple was another success! Attended by hundreds of friends, family, Emily's principal and teachers from three of the town's schools we were able to raise over $13,000, and the donations are still coming....

We are already excited for next year's event. A huge addition this year was a dunk tank. We asked local businesses to sponsor this attraction ($250 a piece, instead of the standard $100 to sponsor a hole) and 5 signed up!! We thanked them on a banner next to the tank. The day started at 45 degrees, and never made it much over 60, but Emily, her brothers and their friends were great sports and kept going in! In addition to the mini golf and free face painting, we sold tickets - $5 for 3 balls to try to dunk someone. It was a hit!

Probably most touching of all, are the new families who came and shared with us that they too struggle with epilepsy. It was great to have the FACES information on hand to share.

3) LEMONADE STAND

By: Ethan Pschenica

Dr. Devinsky's patients are committed to the mission of FACES and we are so proud. Ethan raised $118.00 through a lemonade stand in his home town. Way to go!!!

4) WHY I RUN?

By: Michael Johll

Why I Run?

People ask me why I run, why not just write a check?

It is not easy; in fact this is the hardest thing I believe I have ever done.

I have had plenty of time training to ask myself the same question over and over.

I have been training for a year now and the 5 am runs and sore muscles are now simply a part of my life.

Our family discussions are "what is the next run", "where will we meet to get you more water", "Go daddy go, you can do it".

I have known that I needed to do this for some time but that is a different answer than WHY I needed to do this.

I have never been more clear than I am now about the answer to the question of WHY I run....

I run for all the times Wendy and I have felt helpless and scared and lacked a direction but had to be strong.

I run for Wendy and her amazing resolve and grit in dealing with the challenges that epilepsy has placed in her life.

I run for Samantha and all the times she wondered if her momma was coming back from a seizure.

I run for Gregory because I want to model for him overcoming challenges when you feel you can not finish but you have to; quitting is not an option.

I run for Larry Smart and all the caregivers who have lost the fight with their loved ones, lost love ones and for all those caregivers still searching for hope

I run for NYU Langone Medical team; amazing medical personnel who daily work to unlock the mysteries of epilepsy and bring solutions to all of us.

I run for FACES, tireless individuals making a career out of helping promote awareness and healing for the epilepsy community.

I run for myself. It has been a twelve year journey that has placed an enormous weight in my life. I am now running for the light at the end of the tunnel that now shines brighter than it ever has.

I run for all of the beautiful people that have reached out and supported me, my family and the larger epilepsy community.

This is why I run.

5) RUNNING THE COAST FOR A CURE

By: Al DeCesaris

It wasn’t until my niece Jenna was born that my eyes were opened. And it wasn’t until I saw what children like Jenna are made to endure that my view of the world started to change.

Jenna was born with Sturge-Weber Syndrome – a rare neurological disorder that causes abnormal blood vessels to develop in the skin, eyes, and on the surface of the brain. Although it manifests differently in each person affected, for Jenna it has resulted in a pronounced port-wine birthmark on the right side of her face and glaucoma in her right eye. Despite the severe problems these conditions present, it’s the abnormal blood vessels on the surface of her brain that pose the greatest threat because they often lead to other serious health complications including seizures, strokes and stroke-like episodes, impaired motor coordination, paralysis, developmental delays, learning disabilities, mental retardation, migraines, mood and behavior problems, and in some cases even death.

Over the years Jenna has suffered debilitating seizures and stroke-like episodes, which have left her physically and mentally impaired. To see Jenna suffer with these conditions, to see her struggle because of her physical and mental limitations, to see her experience exclusion and ridicule because of her differences, is heartbreaking beyond words. Yet, her suffering – as well as her bravery and resilience –inspired me to fight on her behalf.

I wanted to do something unique and eye-opening to create as much awareness and raise as much money for Sturge-Weber research as possible. In 2013, I set out on a solo cross-country bicycle ride in honor of Jenna. Pedaling on average 75 miles a day, I rode from Santa Monica, California through 14 states and over 3,000 miles before completing my journey in Ocean City, Maryland. The following year, I took on another incredibly challenging athletic endeavor, this time on foot. Without a support team and with no marathon experience, I ran from Lubec, Maine, close to a marathon a day for three consecutive months, down the entire East Coast to Key Largo, Florida – 1,935 miles in all!

Through my charity ride and run, I created awareness about Sturge-Weber Syndrome across the country, raised critical funds for medical research, and brought hope to my niece and countless others suffering with this devastating disorder.

To further the efforts to find a cure, I wrote books about my charitable athletic endeavors, Crossing America For A Cure: A Bicycle Journey Of Inspiration And Hope and Running The Coast For A Cure: One Man’s Journey For His Niece With Sturge-Weber Syndrome, and am dedicating all profits from book sales to Sturge-Weber research.

Until a cure for this devastating disorder is discovered, I will continue to fight for my niece Jenna and all those suffering with Sturge-Weber Syndrome – be it with my legs, my words, my voice.

***

To learn more about Al’s charitable efforts and his inspirational books, please visit www.AlDeCesaris.com.

6) GABRIELS SUMMER VACATION

"He gives more love, as a lot of times brothers and sisters are mean to each other but he is like a baby and he loves us more. We have to take care of him and watch him and never take our eyes off him", says 9‐year old Gabriel, twin to special needs brother Elijah. Our special child, Elijah, brings much joy to our family. But the single focus of dealing with daily seizures and autism can also be a heavy load.

I was planning to write an article about Elijah's summer camp experience, but Gabriel asked me why I'm always writing about Elijah and never about him, so I decided that I would make this article about Gabriel, and to share Elijah's summer camp experience from his perspective.

Every August, Elijah goes to AHRC's Camp Anne in New York State for 10 days and has a counselor all to himself. Elijah, now 9, started going to camp when he was 5. During this time, we get to do fun activities that our family can't enjoy otherwise. "If I had a normal brother, there would be a chance that we would like the same things, like the beach. But Elijah likes traffic!" explains Gabriel.

"We wouldn't have gone to the beach with Elijah as we'd have to look after him and it wouldn't be a vacation if we had to run after him" says Gabriel, who loves the water. This summer we went to three beaches. "I built lots of sand castles, put a flag on top of the biggest one, and made a moat around it" said Gabriel. "The seagulls on the beach tried to steal our food but I chased them away" he continued. He swam and jumped in the waves and played ball in the water. "I also liked swimming in the lake, with the fish" explained Gabriel, of the days we spend in the country. At Camp Anne, Elijah loves to drive down to the lake on a golf cart and then take the boat out on the lake. As Gabriel observes, "Elijah loves vehicles, so getting to go on two in the same activity is fun for him".

Gabriel also enjoyed some fun excursions while Elijah was at camp: "My favorite place was a working mill that shows how the Pilgrims made corn flour". He also liked visiting the Mayflower II, a replica of the original ship that was built in England and sailed across the Atlantic in 1957. The Mayflower brought dogs and chickens. "Elijah enjoys visiting the animals at camp, especially riding on the horse" says Gabriel. Camp Anne has goats, chickens and a horse, and campers have the opportunity to sit on the horse.

One of the family games Gabriel enjoys in the evening is Trouble. Every evening, Elijah's counselor brings him to the Camp office and we Skype to catch up on the activities of the day and to say good night. At the end of the 10 days, "Elijah was excited when we picked him up from camp", observed Gabriel. "He had a big smile on his face! I was excited too because I hadn't seen Elijah for 10 days, and he is part of our family".

Thanks to the amazing AHRC's Camp Anne, expertly run by Mike Rose, and thanks to the 2016 Blanca Vasquez Summer Camp scholarship, which in part enabled Elijah to attend Camp. I recommend summer camp to all of you with a precious special child. Your whole family will be enriched by the experience.

7) ATTITUDES OF GRATITUDE

“Just wanted to let you know how much we appreciated the room at the FACES hotel. Sawyer's dad and I were able to tag-team and each take the room every other night. I can't tell you how much a good night's sleep makes everything better when you are a parent dealing with the stress and sadness that goes along with caring for a child with epilepsy. Thanks to you and your team for such a great service."

8) NOTE WORTHY NEWS

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