Below are 2 e-mails that I received this week. The first is from China. I am always amazed when I receive e-mails from around the world and realize that from our little corner of the world we are having a global reach. It also reinforces that despite it rarity, rasmussen’s is truly a global disease that knows no boundaries, age, or ethnicity. We have exchanged e-mails with Dr. Fang and he has already agreed to share brain tissue with the Consortium.
The second e-mail is from a mom and is self-explanatory. It captures the heartbreak of incurable epilepsy and rasmussen’s encephalitis.
Please keep sending me your e-mails as we have hooked-up a number of people to support one another and share their experiences.
This past week we had a great time at Zumba for Grace, an event to raise awareness and funds for rasmussen’s. Please click on this link to see pictures. Our heartfelt thanks to Michele Ayoub and Jennifer Kelley for organizing such a wonderful event. It means so much to Grace to be a part of something that is normal, despite her limited ability to particiapte Thank you to all of the participants and your generous donations! Keep an eye out for our next Zumba event this Fall.
On July 31st we move into the pool to hold our second annual swim-a-thon to benefit the RE Children’s Project. Grace will be leading the way in the pool with her Olympic spirit to raise funds and awareness. Click here to see Grace in action last year. Her one-armed crawl is amazing. Many thanks to Megan Brown and Marge Trifone for organizing this event. Help us make a difference and sponsor Grace by hitting the donate button.
Finally, I am reading a book entitled, Saving Jessie. It has been around for awhile and I am sure that many in the RE community have already read it. It is not an easy read, as it accurately recounts in harrowing detail the descent into despair associated with RE. Not a fun book, but one that needs to be read by a wider audience.