Tuesday, May 18, 2010

Finding A CURE


I feel blessed to have a good friend named Evelyn Nussenbaum. She is a positive and happy woman with high hopes in helping to find a cure for epilepsy. Evelyn and her sweet hubby, Fred, have a two children with epilepsy. Actually, the kiddos are twins and they are fantastic! So, not only is Evelyn busy raising her kids, one Keto and the other has great control with meds, she is also charging forward with plans to host a huge benefit dinner in San Francisco for the C.U.R.E (Citizens United for Research in Epilepsy) Foundation next March 25, 2011. It will be a beautiful Friday evening event held at the Four Seasons. She really is amazing and I'm lending a hand in whatever capacity she needs me!


As a kick off to her efforts, Evelyn and her sweet hubby hosted a nice lunch in San Francisco. Thank you Evelyn for including me! It was really amazing to meet so many people focused on finding the cures necessary to help in the epilepsy battle.


The President of the CURE Foundation, Susan Axelrod, was in SF for the day and attended the lunch. It was really nice to meet her. It is fascinating how epilepsy binds families together automatically. It's an experience that changes you at the core and when you meet other families that are traveling that same path, you become linked in a way that is beyond description. I enjoyed Susan's down-to-earth personality and her openness in talking about the journey through her daughter's epilepsy as well as how the foundation is proceeding in its funding of different research projects. Check out the two links below.

http://www.cureepilepsy.org/home.asp

http://presidentscorner.cureepilepsy.org

Also in attendance were two researchers that have received grants from the Foundation recently. I had the pleasure of sitting next to Scott Baraban, PhD from UCSF and across the table from Daniela Kaufer, PhD from UC Berkeley.

Both Scott and Daniela are involved in research that will change the future for epilepsy patients. Scott's work with SCN1A gene mutations is right up our alley. Noah's GEFS+ is a sodium channel epilepsy caused by an SCN1A gene mutation. I found Scott's research fascinating and can't wait to see and hear more about it. Daniela's research focused on the blood/brain barrier. Well, once again, right up our alley considering that ketones (Keto Diet) break that barrier. Her research also focused on head trauma and status seizures in which proteins cross the blood barrier and create a path/genesis for epilepsy in the brain. Fascinating stuff. Once again, completely relevant for us because many many of Noah's seizures were status in presentation.

It was also great to meet several other parents that are fighting this battle and trying to help Evelyn host this benefit and find a cure for epilepsy! I believe there were about 18 people in attendance. At least 10 of those people will be lending Evelyn a hand!

If you live in the Bay Area, set the date on your calendars! We want everyone there! We can make a difference! Let's kick this thing!!

Thanks Evelyn! You rock girlfriend!
(ummm... I will not post pictures of me that day cause I had puffy allergy eyes and looked like I needed some plastic surgery help with my face!)

3 comments:

Cristina said...

Sounds like a great event! Wish we were closer.
Remember to look us up (we have keto family get togethers every other weekend) if you visit SLC this summer! :) Love to you, Noah and the rest of the family!

Anonymous said...

Hi Cathy! Thanks for posting this information. I wish I had known about the luncheon and will definitely put the '11 event on the calendar. Let me know if you need any extra hands!

Kara

Jan said...

Hi Cathy,

My name is Jan and my 5 year old daughter is on the keto diet for her epilepsy. I actually found you through the yahoo keto group...I had seen a post you had made about your son experiencing severe "carpal pedal spasms". Right now I am in the hospital with my little girl and basically EXACTLY what happened to your son has just happened to her. I learned the supplements she had been on were not sufficient, and while none of her levels were horribly low, several of them were slightly low. I was wondering what supplements you switched to? I would like to make those suggestions to my nutritionist and see if we can have the same success you did. I appreciate your help! You can email me at jansimpler@gmail.com. Thank you again!

 

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