Saturday, May 17, 2014
Ready for a book signing!
Sunday, May 11, 2014
Evan's book signing!
Evan Moss, a ten-year-old from Alexandria, struggles with a disease that is the leading known genetic cause of epilepsy and autism, but he carries out that struggle in a very unique way-- he writes books about it. Evan will be signing his newest book, My Life With TSC, on Saturday May 17th from 2:00 through 5:00 at Grounded Coffee Shop in Alexandria.
TSC (tuberous sclerosis complex) is unfamiliar to many people, even though it affects one million people worldwide. Evan’s goal is to raise awareness and much needed funds for medical research to unlock the cure for TSC in conjunction with TSC Global Awareness Day on May 15.
Relying on his wit and sense of humor as he tackles this serious topic Evan is the author and illustrator of My Life with TSC. In the book, Evan shares with the reader, through the charming perspective of a child, what it is like to live with this rare disease. As he describes his experience, a little poetic license allows him to escape a zombie brain invasion, turn into a lion and win a race against a cheetah – all in a day in the life of Evan Moss!
Evan is not a typical 10-year-old; this is actually his second published book with a philanthropic mission. In 2011 he wrote and published My Seizure Dog, to raise the necessary funds to receive a seizure assistance dog while also helping other children receive service dogs. As a result, he raised over $50,000 for 4 Paws for Ability and helped 7 children complete similar fundraising goals. In a similar book signing event at Grounded Coffee that was covered by several major print and broadcast outlets, more than 600 people lined up to meet and chat with Evan.
Evan has been struggling with epilepsy and TSC his entire life and is still having three to four seizures a month, but because they last several minutes medical intervention is always necessary to stop his seizures. As his family and doctors actively pursue new treatments for Evan, he has learned about the importance of research and has even participated in research studies.
Evan is dedicating funds raised through the sale of this book to the Tuberous Sclerosis Alliance, a 501(c)(3) nonprofit organization, for valuable research for TSC. Books are also available online at Amazon (http://www.amazon.com/My-Life-TSC-Evan-Moss/dp/1497587573/ref=sr_1_3?ie=UTF8&qid=1399164623&sr=8-3&keywords=evan+moss ).
Help Evan Unlock the Cure for TSC by purchasing his book or making a tax deductible donation. To learn more about Evan or to make a donation, visit www.MyLifeWithTSC.com
TSC (tuberous sclerosis complex) is unfamiliar to many people, even though it affects one million people worldwide. Evan’s goal is to raise awareness and much needed funds for medical research to unlock the cure for TSC in conjunction with TSC Global Awareness Day on May 15.
Relying on his wit and sense of humor as he tackles this serious topic Evan is the author and illustrator of My Life with TSC. In the book, Evan shares with the reader, through the charming perspective of a child, what it is like to live with this rare disease. As he describes his experience, a little poetic license allows him to escape a zombie brain invasion, turn into a lion and win a race against a cheetah – all in a day in the life of Evan Moss!
Evan is not a typical 10-year-old; this is actually his second published book with a philanthropic mission. In 2011 he wrote and published My Seizure Dog, to raise the necessary funds to receive a seizure assistance dog while also helping other children receive service dogs. As a result, he raised over $50,000 for 4 Paws for Ability and helped 7 children complete similar fundraising goals. In a similar book signing event at Grounded Coffee that was covered by several major print and broadcast outlets, more than 600 people lined up to meet and chat with Evan.
Evan has been struggling with epilepsy and TSC his entire life and is still having three to four seizures a month, but because they last several minutes medical intervention is always necessary to stop his seizures. As his family and doctors actively pursue new treatments for Evan, he has learned about the importance of research and has even participated in research studies.
Evan is dedicating funds raised through the sale of this book to the Tuberous Sclerosis Alliance, a 501(c)(3) nonprofit organization, for valuable research for TSC. Books are also available online at Amazon (http://www.amazon.com/My-Life-TSC-Evan-Moss/dp/1497587573/ref=sr_1_3?ie=UTF8&qid=1399164623&sr=8-3&keywords=evan+moss ).
Help Evan Unlock the Cure for TSC by purchasing his book or making a tax deductible donation. To learn more about Evan or to make a donation, visit www.MyLifeWithTSC.com
Sunday, May 4, 2014
Evan and Tuberous Sclerosis
Evan has been struggling with epilepsy and tuberous sclerosis complex (TSC) his entire life. He was born with four brain tumors and began having seizures as a one-month-old and by the time he was four years old, he was having 300-400 seizures a month. At this young age he underwent brain surgery to remove three tumors and control his epilepsy. He left the hospital seizure-free. He had freedom from seizures for almost two years but the seizures have now returned, less frequently than before surgery but of dramatically increased severity. Evan has three to four seizures a month, but because they last several minutes medical intervention is always necessary to stop his seizures.
Families often say TSC is like walking in a mine field -- you never know what to expect next. In addition to the challenges of seizures, Evan also has multiple kidney tumors. One of them is almost 3 cm. and is being watched closely. There is a medication that can shrink this type of tumor and it will be interesting to see if Evan will be able to try this medicine with minimal side effects.
As his family and doctors actively pursue new treatments for Evan, he has learned about the importance of research and has even participated in research studies. This unique experience has led him to the desire to raise money for TSC research.
Families often say TSC is like walking in a mine field -- you never know what to expect next. In addition to the challenges of seizures, Evan also has multiple kidney tumors. One of them is almost 3 cm. and is being watched closely. There is a medication that can shrink this type of tumor and it will be interesting to see if Evan will be able to try this medicine with minimal side effects.
As his family and doctors actively pursue new treatments for Evan, he has learned about the importance of research and has even participated in research studies. This unique experience has led him to the desire to raise money for TSC research.
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