Need Spring Soiree financial support? Also 5k opportunity

[prin...@sethigh.org]

Dear Students, Parents, and Guardians,

• Anonymous survey in case you cannot afford the Spring Soiree
• 5K fundraiser for Cure CMT4J (5/20)

Anonymous survey in case you cannot afford the Spring Soiree

We are really hoping to have all of our families attend the Spring Soiree, but we know that the cost of the event may make it difficult to attend.  We have some staff and parents who would like to help with the cost.  We're not exactly sure how to make this work without potentially embarrassing those who do have a financial need, but a good starting point is to figure out what the need is.  Parents, if you would really like to go to the Spring Soiree but need some financial assistance, please fill out the following anonymous survey.

 

5K fundraiser for Cure CMT4J (5/20)

Join us in supporting those who have been diagnosed with CMT4J at a 5K on May 20th.  We have a student who has CMT4J and when his mother learned that some of us will be at the 5K, she asked if we could announce it to the whole community.  She wrote the following message to her community of friends:

When Gavin was 10 years old he was diagnosed with an ultra-rare peripheral neuropathy, CMT 4J. At the time of his diagnosis, there were only around 25 known patients in the world. This disease is progressive, and in the past 6 years he’s gone from running, biking and playing, to barely being able to walk to with leg braces and crutches. It’s been frustrating and painful as a parent to know that I typically have a greater understanding of the disease than his doctors, as having an ultra-rare disease limits resources, research, treatments and cures.

About a week ago, I found that another young boy in San Diego also shares this painful diagnosis. I just learned that she is putting together a 5K fundraiser to support the only foundation that is solely supporting a treatment and cure for his specific diagnosis.  The Cure CMT 4J is a non-profit foundation and very close to having a gene therapy trial/treatment. I would greatly appreciate any support you would be able to provide to this upcoming event.

Please see additional information below for registration for the 5K. Participation can also be done virtually if you are interested.

To register, email CMT4J.5kf...@yahoo.com and Venmo $30 to Jacklyn-Strauss. Donations can also be made to the nonprofit foundation: curecmt4j.org.  

The 5K starts at 9 a.m. Feel free to spread the word!

Here is a flyer for the event.

Thanks everyone!

Dr. McCurdy