September 2013 FACES E-NEWSLETTER
- Partners in Philanthropy
- A Genetic Discovery from Epi4k Consortium and Epilepsy Phenome/Genome Project
- Recipe of the Month
- CEC Staff Spotlight: Lourdes Guzman
- A Summer Camp Experience by Tessa Mahoney
- Connecting to FACES Through Social Media
- Fundraising Corner
1. PARTNERS IN PHILANTHROPY
Lundbeck Proudly Supports FACES
Committed to helping people living with challenging seizures, Lundbeck is a pharmaceutical company actively involved in the epilepsy community on both a local and national level. Lundbeck is a proud supporter of FACES events, from the annual gala to community building events and education programs. The company shares FACES desire to improve the lives of people living with epilepsy. In addition to providing support for FACES research initiatives, Lundbeck is heavily engaged in research and development, annually reinvesting more than 20 percent of revenues in R&D. Click here for a video showcasing some of the company’s epilepsy research efforts.
In addition to its support of FACES, the company provides support for many of FACES’ community partners. For instance, Studio E: The Epilepsy Art Therapy Program is made possible through a partnership between Lundbeck, the Epilepsy Foundation and more than 30 of its local affiliates nationwide, including the Epilepsy Foundation’s affiliates in Long Island and New Jersey. This program provides free art therapy sessions for people living with epilepsy (learn more here). Lundbeck also partners with the Lennox-Gastaut Syndrome Foundation to fund a scholarship allowing many families to attend the organization’s annual Family & Professional Conference, and supports all of the Tuberous Sclerosis Alliance’s local walks and educational programs. Its employees are inspired by actively participating in hundreds of epilepsy events each year. Learn more about all of these initiatives and support at www.YourPartnerInEpilepsy.com, and please stop by and say hello to the Lundbeck representative at the next FACES event!
2. A GENETIC DISCOVERY FROM EPI4K CONSORTIUM AND EPILEPSY PHENOME/GENOME PROJECT NYU
Langone Medical Center and University of California San Francisco organized “The Epilepsy Phenome/ Genome Project” (EPGP) in 2003, using seed money from FACES. More than 25 major epilepsy centers and over 100 investigators and colleagues throughout the United States, Canada, and Australia collaborated to create a powerful database on epilepsy. EPGP recruited over 3,800 epilepsy patients, family members and control individuals to study the relationship between clinical (phenome) and genetic (genome) data. EPGP finally closed enrollment, after 5+ years, with NYU enrolling 411 total participants – the most of any site. Preliminary results of the DNA analysis for the group with severe epilepsy (infantile spasms and Lennox- Gastaut) have found that at least 15% of cases can be explained by an identifiable gene mutation. This could lead to an early screening test, or a specific therapeutic intervention in these cases.
3. RECIPE OF THE MONTH
By: Dara Tannariello
6 slices prosciutto, halved
3 eggs at room temperature
1/4 cup heavy cream
1/4 cup mascarpone, at room temperature
1/2 teaspoon lemon zest (optional)
Pinch freshly ground pepper
Small pinch ground nutmeg
1/2 teaspoon chiffonade fresh basil
chiffonade: cut into long, thin strips. For the basil, roll it up thin like a cigar and then cut into long, thin strips.
- Preheat the oven to 400 degrees F.
- Making the prosciutto cups: Lightly spray 12 mini-muffin cups with cooking spray then line then with the halved prosciutto slices.
- Making the eggs: Add the eggs, heavy cream, mascarpone, lemon zest, pepper and nutmeg to a large measuring cup with a spout. With a hand-held blender or mixer, puree for 30 seconds or until evenly combined.
- Bake the cups until the eggs are cooked and the prosciutto is crispy, about 15 minutes. Serve warm.
|Per cup:||Total (All 12 cups):|
|64.8125 calories||777.75 calories|
|5.464 g fat||65.565 g fat|
|.2642 g carbs||3.17 g carbs|
|3.297 g protein||39.56 g protein|
4. CEC STAFF SPOTLIGHT: LOURDES GUZMAN
Lourdes Guzman is an Administrative Assistant at the Comprehensive Epilepsy Center, and has been a part of the group for five years. Behind the scenes at the CEC, Lourdes assists Dr. Orrin Devinsky and Dr. Patricia Dugan with the everyday needs of the patients who visit the center. Her tasks range from coordinating schedules and assisting with prescription refills, to simply confirming an office address. However, Lourdes is always ready to help patients beyond these requests. Her personal goal is to ease concerns, and with this goal in mind she provides emotional support to the community, hoping to make sure people have one less thing to worry about.
The CEC has made a strong impact on Lourdes’ life. “From working with world class doctors that give 150% of themselves and have inspired me to do the same for others, to the RN's and NP's who work tirelessly to ensure patients are taken care of, and most especially the other administrative assistants whom without I would truly be lost,” said Lourdes. “We are a team and work together as much as possible.”
Lourdes is a believer in community involvement and being a part of something bigger than herself. To get more involved with the patients she serves daily, Lourdes volunteered for the first time last year at FACES Game Day and the first annual Epilepsy Walk. “It was such an amazing experience, I hope to volunteer for many years to come,” said Lourdes.
It is easy to see that Lourdes loves her job and takes great pride in the work she does. She hopes this passion comes across to the people she speaks to everyday!
5. A SUMMER CAMP EXPERIENCE
By: Tessa Mahoney
Hi, my name is Tessa Mahoney. I am writing to say THANK YOU for awarding me a Dr. Blanca Vazquez Summer Camp Scholarship to Brainy Camps’-Camp Great Rock. This is a camp for kids like me. Kids with seizures.
My experience at Camp Great Rock:
I got an award for being “Little Miss Easy Going”
Before camp I was nervous. Then I realized there was nothing to be worried about being there because there are a lot of people like me. When I got there I saw the camp site. I thought that it would be different. There were a lot of hills and a lot of walking. I had a lot of fun at camp. There were other camps there too, in different areas. It was like a mountain of kid camps. There were a lot of activities. Some of the activities were horseback riding, swimming, volley ball, gaga which is a combination between kickball and dodge ball, tennis, basketball, circus, animal care, fishing and go- karts. We had some other activities at night like a talent show, a movie night which was Wreck It Ralph, and a dance. We got to swim every day. I played volley ball every day, I didn’t know I liked volleyball so much! The talent show was fun. The dance was a lot of fun!
The campground is big and pretty!
In horseback riding we learned how to get the horse to stop then go and turn. In tennis we learned how to hit the tennis ball over head and also to the side. Gaga was a lot of fun I made it to the last five but then I turned away and I was out. Also I went to art we painted masks and we made ear rings. I met a lot of people like me. That has made me realize that I’m not alone. There are a lot of people like me. We had groups every other day to discuss about our seizures. The purpose was for us to realize that there are a lot of people like ourselves. Groups were just 30 to 45 minutes every other day. Every morning we had to walk up a big hill, then another hill just to go get to our medicine in the morning. Then we had to go back down the hill to breakfast. For me I had to take my meds at 8:00 am and 8:00 pm. Some people had to take breakfast, lunch, and dinner meds. I did several activities but I did volleyball the most. Volleyball was a lot of fun. The second most fun activity that I did was archery. I also liked horseback riding and tennis. In tennis we would get tennis dollars to spend if we do well but unfortunately I didn’t even get one dollar.
We had a movie night on Thursday. Earlier in the day before the movie we asked if we could prank a cabin. We were allowed to prank. The rest of my cabin chose to prank it with toilet paper. I didn’t want to participate so I didn’t. We went to the movie but we were a little late because of the prank. During the movie I fell asleep because I was so tired. The funny thing was my counselor came to me and asked me if I wanted to go back to the cabin and I said no. I got to sleep for an hour. We also had a talent show during camp. It was a lot of fun. There were a lot of acts. People did singing, dancing, contortion which is like bending your body. We had some technical difficulties but it was Camp Great Rocks first time at this Facility. On the last day of camp we had a dance. We had an hour of prep Going” time. They held the dance in the gym which was small. I didn’t expect a dance when I was packing so I really didn’t pack anything for a dance. I had a lot of fun. I danced with my CIT (counselor in training). I almost lost my voice from yelling and singing! The next morning my voice was hoarse.
This was my bunk house. It had three
rooms plus a big bathroom
Our theme this year was based on Superheroes. We were separated into two different groups DC and Marvel, like the comic books. I got put on the DC group. We had to make a team cheer. We also had a kickball competition, water balloon fight, and a catch the flag game. By the end of camp DC, lost by 400 points. Each team had their own color to wear then we had to think of our superpower and name. We also had a Campfire. We sang songs, roasted smores, told jokes. It was lot of fun. Me and my friends sat back in chairs behind everyone and messed around. A lot of us dumped water on each other. We got marshmallows wet and squished them on each other.
By the end of camp I met a lot of people like me. There were almost 80 kids that have my condition or something like it. I was able to do things that I can’t do at home like horseback riding and archery. I felt like at camp I was not limited. Without this scholarship I wouldn’t have been able to meet all these people like me and also have all the fun that I had. I already know I want to go next year. I have already written letters and text messages to friends I made at camp. I now have friends from all over the US and Canada! I was able to go to my support group for seizures and tell other kids about Camp Great Rock. I even got to see my friend from camp!
Thank you again for helping me go to Camp Great Rock!
FOR MORE INFORMATION ABOUT THIS CAMP:
Brainy Camps website: www.brainycamps.com
Sandra Cushner Weinstein, PT, LCSW-C
Director, Brainy Camps
Susan Mehlman, Ph.D.
Assistant Director, Brainy Camps
Social media is everywhere, but that’s something you already know. Whether you are home, at work, on vacation or just on-the-go, current mobile applications and wireless devices, such as the iPad, make it simple to stay connected. Besides the innovative technology sources, there are also hundreds of social medial channels to choose from like Facebook, Twitter, YouTube and LinkedIn, which are more common, but also Flickr, Foursquare, Tumblr, Pinterest, Dropbox and countless others. Yet once again, you already know this.
What has changed however is how we think about using this technology. It’s become more than just a ‘status update’ or a ‘photo upload’, but it’s become a way to share important information or a simple message. Here at FACES we use social media to pass along inspirational stories, current medical articles, upcoming educational and fundraising events and programs that serve the epilepsy community.
We want to spread our mission even further, not just nationally but globally. FACES can help people all over the world living with epilepsy by offering similar resources, information and support. Social media is a worldwide tool and is the quickest, easiest way to do this – with just the click of a button.
There are currently:
1.15 billion Facebook users
500 million Twitter users (200 million active monthly)
1 billion YouTube users (4 billion views per day)
That’s a great deal of people to try and reach! How can you join in on our efforts? There are five simple steps we can guide you through, some of which are activities you most likely know how to do.
Second - SPREAD the word and TELL your story
Your followers may not know about FACES and the important work we do until you tell them about us. On all social media channels there are features to re-post (or re-tweet) the stories, photos and videos we share. Accompany these re-posts with an anecdote, telling your community why FACES means so much to you.
Third - ENGAGE your followers to take action or get involved
FACES hosts many events throughout the year - fundraising events, social events and educational events – that your friends/family can get involved in. Ask them on your social media channels to support or even attend. It’s quicker than sending them an invitation or letter in the mail!
Fourth – THANK your followers for their support
If your friends/family members support something you have asked them to do for FACES, or any cause, thank them! This can be done with a message, a photo, a fun video, a tweet, whichever channel you used to generate the activity. Not only will they appreciate it and continue to join in on your efforts, but their followers will see what they have done and it will be another method to generate awareness.
Fifth – DON’T STOP!
Keep the conversation on-going so your followers are constantly updated. You don’t want to send out too many messages (for example, numerous posts every day), but sending out an update or message weekly reminds people that FACES is active and continuing to work for the community. If you have any questions on how to connect to FACES or if you have additional social media ideas, send us a message at firstname.lastname@example.org – or tweet at us!
7. FUNDRAISING CORNER
Jared’s Bar Mitzvah Dreams
Jared Pascarelli and his family wanted nothing more than to celebrate his life and Jewish heritage with a bar mitzvah at the age of 13 years old, but the Pascarelli’s knew it would not be an easy journey. Jared began having seizures at only 10 months old and has since been battling with epilepsy. Throughout his childhood he has struggled to attain skills, move, speak, read, think and perform other daily functions.
It was an incredible accomplishment that on June 29, 2013, Jared took part in his bar mitzvah. Jared worked on his educational goals for 2 years, seeking support from those who specialize in special needs studies for Jewish children, as well as guidance from spiritual leaders, teachers, and students at Temple Concord.
Jared and the Pascarelli family
In addition to his rigorous studies and practice of Jewish traditions, Jared also wanted to perform a mitzvah in honor of this special achievement. He chose to walk in the Salt City Walk on July 13, 2013, promoting awareness and support for those living with epilepsy, and he set a goal to raise $1,000 to support the mission of FACES. Jared focused on FACES as part of his project because of the help and support he and his family received during his treatment at NYU Langone Medical Center. They are extremely grateful for the services they were given while focusing on his healthcare.
By the time his bar mitzvah was here, Jared raised $1,187 in support of FACES – surpassing his goal! Jared is an inspiration to his parent’s and to many others. Rabbi Rachel Esserman, of The Reporter Group wrote an article describing Jared’s journey.
Ride for a Cure
Margaret Pedersen & Orrin Devinsky, MD
On August 20, 2013 avid cyclists and supporters of FACES took part in a Soul Cycle Charity Ride in Greenwich, CT to spread the FACES mission and epilepsy awareness. Soul Cycle is an indoor cycling studio, offering engaging workouts that benefit both the mind and body.
Organized by Margaret Pedersen – no stranger to the FACES community – the charity ride was led by Soul Cycle instructor Nina Rutsch and attended by 60 cyclists. The ride raised an incredible $17,000 towards the programs and services FACES offers to the epilepsy community. Our very own Dr. Orrin Devinsky and his wife Deborah were able to take part in the ride, alongside Margaret and other riders who were either affiliated with the practice or friends of Margaret.
Margaret was diagnosed with epilepsy in 2005 when she was 10 years old. Her family has been extremely involved with FACES as a result of the big part Dr. Devinsky has played in their lives for the past 8 years. The Soul Cycle ride was her chance to give back one more time before leaving for college this fall, and a way to say thank you to Dr. Devinsky for everything he has done. The ride helped her also show support for all the children suffering from epilepsy, especially those she’s met at hospitals and past FACES events. Margaret is fortunate enough to have her epilepsy under control, but has unfortunately met many others who cannot live a normal life because of the severity of their epilepsy.
In her initial outreach to Soul Cycle, Margaret stated “I would love nothing more than to raise money to help find a cure, so that one day in the future all those kids can live a normal, healthy life just like I do.”
Take a look at these uplifting pictures from the rigorous, yet fun ride at Soul Cycle!
FACES Supporters at Soul Cycle
Margaret Pederson & Soul Cycle
instructor, Nina Butsch
Registration deadline: September 25
There is a $5 registration fee per guest and it includes a special gift!