Helping families find the critical information and support they need
December 11, 2019
Report from Rare Disease Week in D.C.
March 2, 2017
2019 - The Year in Review
December 31, 2019
Reaching out for Support
March 23, 2013
(The following is an email that JayEtta, Elliott's grandma, wrote to friends and family providing an update on Elliott and the drastic change his undiagnoised neurological medical condition has had on the entire family's lives.)
Dear family, old and some newer friends,
I first genuinely apologize for the long delay in reaching out and especially the mass e-mail but I hope you’ll understand how all consuming every day is as you read on.
Our family has been forever changed and devastated by the most difficult and painful experience imaginable.
Our daughter Gabi (with the help of her husband John) gave birth in November, 2012 to a beautiful little boy who is catastrophically disabled by a yet undiagnosed neurological disorder.
I write because to push beyond the despair and isolation, we are just beginning to try and launch a campaign to develop support for research to potentially help little Elliott, but more likely children yet unborn with similar challenges.
We are hosting an initial organizing meeting on April 12th at our home in D.C. and are in the process of designing a website and campaign strategy to raise awareness and funds.
It is clear that this effort will require lots of diverse talent, perspectives, and engagement by a circle far broader than our immediate family to be a success. As such, even though the effort is still nascent, I wanted to reach out and inform you of our efforts. We invite your participation in any form that might work for you. This could simply include providing comments on our materials or ideas for moving forward. Or perhaps after reading the attached you’ll think of some contacts or resources that could be helpful as we move forward. Or maybe you’ll think of a skill you have that might support our efforts. Or maybe you have the resources to make a contribution once we get the fundraising effort underway.
I am attaching a write up explaining our initial ideas on information to present in a website still being developed. Your input and suggestions for this effort are very welcome.
In addition, even though we don’t expect many of you to be available, we will be forwarding you an evite for our initial organizing event on the 12th. We are very pleased that one of Elliott’s neurologists and the principle investigator on the research we are raising funds for will speak at the event. The purpose of this initial event is to develop allies and partners to help us structure and launch a successful and sustainable campaign.
Again I apologize for not being able to send you a personalized note. But you have been an important part of my past life - and I write to ask for your support in the overwhelming emotional, medical, financial, and logistical challenge our family is tackling.Feel free to pass this note and the evite on to others you think might be interested. Our email listings are sadly incomplete so we know there are others who may be interested. Alternatively, if you are not interested, let us know and we can take you off our list, as we are trying to develop a standing list of follks who we will keep in touch with as the campaign kicks off - and as any developments occur in Elliott’s condition.
We would love to hear from you with any input or thoughts you have.
With appreciation in advance for your interest, understanding, engagement, and prayers,