Hi all,
I was wondering if you’d consider donating to the Costello Syndrome Family Network this season. Costello syndrome is an exceedingly rare genetic syndrome caused by mutations on the HRAS gene, something well-known among cancer researchers – but in our children, the mutation is in every cell.
We think the prevalance is roughly 1:3 million, and it appears that there may well be an existing medication that could help cure our children! (and lovastatin – the cholesterol medication so many older men are on – may be one of them)
You can help in a number of ways :
- A direct Donation On-line via the CostelloKids website
- Do your shopping at the Yellowbrick Mall great for last-minute Christmas shopping. When you link to a store and make a purchase, a portion of that purchase (the percentage or dollar amount listed under the merchant’s name) goes to the Costello Syndrome Family Network. It’s that easy!
- You can send a donation directly to our Treasurer:
- Katie Slawitschek
39 Munn Road
Southbury, CT 06488
The Costello Syndrome Family Network is a 501c3 nonprofit organization, so your donation is fully tax deductible.
All funds will go toward our bi-annual international family conference. This next year’s conference at the Doubletree Berkeley Marina 7/30-8/2/09, is the first time we’ve gone solo, without an institutional host.”
Funds go to help defray the costs of the 6th International Costello Syndrome Conference, which will provide a venue for clinical researchers to meet up with willing parents on the first day, medical information meeting sessions with doctors from Harvard, Nemours (Delaware), UCSF, MD Anderson (Houston), Australia, University of Utah, Hospital of the King’s Daughters (VA), Manchester, UK, Duke University on the second day, nonmedial (greater life) sessions like Puberty: What to Expect and How to Handle It for parents raising children with developmental disabilities, vision therapy, SSI, Conservatorship/durable power of attorney issues, augmentive communication, and the like on the third day. The third day is concurrent with an international research symposium on Costello syndrome and 3 other related syndromes. The fourth day we’ll have a lunch panel with attendees of the symposium, to share what they learned from the symposium.
We provide all this for free to everyone, because we know how hard it is for them to come – both doctor/researchers, most who come on their vacation time and personal travel money, and families who manage to pull it together, including a nurse often, and traveling with a developmentally and medically disabled child.
The greatest benefit is providing a venue for families to meet others who have been down the same path – a place not to have to explain themselves or their child. And the children, for once, meet others who look, feel and act a lot like themselves. And the siblings can hang with other siblings where they don’t have to defend their sister or brother, or wish for more attention because their parents need to spend so much time with their sister or brother with Costello syndrome.
If we can raise enough money, we’ll be able to hire a childcare service which can cater to their needs and pleasures while their parents attend the sessions. Funding also pays for the meals, and modest honoraria for the speakers.
Whatever you can give would be greatly appreciated! And please consider passing this on to your friends. Or use the link below, and email this to all your friends in your address book, or facebook with just one click.
Thank You
