Lauren Savino's Legacy (CCHS)
CCHS is a rare disease. There are at most 1200 diagnosed cases of CCHS in the world. There is no cure. There are no medications. The ONLY treatment is LIFELONG mechanical ventilation. Some with CCHS are vent dependent 24/7. My sister passed away in her sleep after becoming disconnected from her ventilator. It can happen to anyone with CCHS. We need funding support for research, as CCHS receives little funding from the government or pharmaceutical industry.
We need a cure. We need hope for a better future for our kids with CCHS. It may be too late for my sister Lauren, but it's not too late to make things better for my niece McKenna's future.
In Lauren's honor, please consider making a donation not just for CCHS research and education, but to also support the future of her two little girls, McKenna and Elena. All proceeds will be split evenly with the CCHS Foundation (link to information below), and a fund set up for the sole benefit of the education and care of McKenna and Elena.
Please share even if you can't make a financial contribution. Spreading awareness is equally as important.
And if you have a moment, please take the time to read a tribute to my sister, written by my best friend Brienne Walsh - link below.
With Much Love,
Kim and the Savino Family
It's been a while since I've sent you all an update. So I thought I'd send you one as this fundraiser is coming to a close (1 week to go). I wanted to thank you for your generosity and for spreading the word about CCHS. I also wanted to let you know that my sister's girls are doing well. They are adjusting, making friends, growing, and are all around happy kids who are very loved.
While this fundraiser will be finished, the hard work of those in the CCHS community will continue. As a CCHS community we've been hit hard over the past few months. My sister was not the only one we lost. And while it may not be realistic to believe that a cure is around the corner, it is realistic to believe that we can do better for our kids living with CCHS. A better, safer, quality of life for those with CCHS is my goal. And the goal of the entire CCHS community.
To that end, the CCHS community has come together to create the first International CCHS Day on November 14, 2015 to raise awareness and funds - - Donations raised from events surrounding this day will be used by The CCHS Foundation Research Advisory Board to award CCHS research grants in February 2016. Please feel free to share information about CCHS day (see press release below or click this link: http://www.cchsnetwork.org/component/content/article/141), or participate yourselves. We hope to grow the day in years to come.
If you're looking for a way to continue to help that won't cost you any $$, how about considering shopping at www.Smile.Amazon.com? It's exactly the same as the regular Amazon, but if you select the CCHS Network as your charity of choice, a percentage of each purchase will go directly to the CCHS Network/Foundation. Consider it as the holidays approach.
Finally, CCHS has been in the news lately. If you have a few minutes, please read and/or share the 2 below articles below about my friends Nico and Marissa.
Thank you all so much.
CCHS Day, 2015
CCHS Network, Inc.
PO Box 230087
Encinitas, CA 92023-0087
FOR MORE INFORMATION, CONTACT: Melinda Riccitelli, Foundation Co-chair
The CCHS Foundation (760) 633-3141
FOR IMMEDIATE RELEASE
CCHS FOUNDATION ANNOUNCES FIRST INTERNATIONAL CCHS DAY
Encinitas, CA, [Sept. 18,2015] —
The CCHS Foundation proudly announces the first annual International CCHS Day on November 14, 2015. The CCHS Foundation is the fundraising arm of the CCHS Network, a support and advocacy organization for families living with Congenital Central Hypoventilation Syndrome (CCHS). CCHS is a multisystem disorder of the central nervous system where, most dramatically, the automatic control of breathing is nearly or totally absent. A CCHS patient’s respiratory responses are sluggish when awake and absent to varying degrees during sleep, serious illness, and/or stress. Treatment for this rare medical condition is limited to mechanical ventilation and there is no available medication to date. There are approximately 1200 individuals affected worldwide. CCHS patients and their families across the world will celebrate CCHS Day by raising both awareness and funds for the advancement of research and future treatments. Planned fundraising events include a social media campaign named the “No-Show Pajama Party”, a video game marathon, Dine and Donate events across the United States, as well as numerous international happenings. Supporters can keep up with the various projects using the hashtags #CCHSDay2015 and #OurCurseIsOurCause. You can follow the CCHS Foundation on Facebook @ https://www.facebook.com/TheCCHSFoundation and Twitter @CCHSNetwork. Additionally, the Academy Award nominated documentary on CCHS, Our Curse, can be viewed on the New York Times webpage. “The CCHS Family Network was started in 1989” reports Melinda Riccitelli, CCHS Foundation Co-Chair. “Up until then, CCHS was so rare that not a single organization or support group existed to ease the burden of this complicated disease. Twenty-seven years later, we continue the work of advocating for CCHS patients and families. It is thrilling to announce our first International CCHS Day. We hope this day brings greater awareness, harnesses resources and leads to be better treatment options for our orphan disease.” The CCHS Foundation and CCHS Network gratefully acknowledges the help and support of its volunteers and board members. The CCHS Network, Inc. is a registered 501(c)(3) non-profit organization.
But, my personal goal is more than money. It's to raise awareness of CCHS so that we can find a cure, or at the very least, improvements for a CCHSer's quality of life. I want to do this for my niece McKenna.
McKenna is currently in surgery to implant a cardiac pacemaker. She is 7 years old.
CCHS is a disorder of the central nervous system. So just like the brain doesn't tell the lungs to work at night, for someone with CCHS, it also doesn't tell other organs to work properly. Like the heart. McKenna's heart is healthy. But her brain doesn't tell her heart how many beats per minute she should have. So her heart will pause for over 4 seconds at a time. The only thing that can help is a pacemaker.
Now I'm not a doctor or researcher. So I don't know what the solution is. But I do know the only way we'll find one is with greater awareness and research funds.
So please continue to spread the word about this disorder. So many families going through what we go through will be forever grateful.
#CureCCHS #CCHSin4TheCure #Live4Lauren
Instead, I am sharing the sad news that we lost another young person to CCHS this past weekend. Less than one month since Lauren. This young man, 25 years old, was a registered nurse, and worked in hospice care. His name was Taylor Coy Jordan. He was funny, smart, and kind. He was in his bed, reading his bible, when he accidentally fell asleep without putting on his machine. He never woke up. That is how easy it is when you have CCHS...
In June 2014 we had our last CCHS Family Network conference at Disneyworld. Since that date, we have lost 3 young people to CCHS.
Those with CCHS deserve better. Thank you for your help in raising awareness of CCHS, and contributing generously towards research. The fact that there are so many unfamiliar names here makes me believe that the word is spreading far.
Please continue to share the stories of Lauren, Taylor, and all those with CCHS.
And if you have a few minutes, please consider watching, or sharing, this Oscar nominated short documentary about the first few months of a family dealing with CCHS:
#CCHSin4theCure #CureCCHS #live4lauren
Here is McKenna, our little princess -- we want a better, more hopeful future for her. Thank you for being a part of it.
Please continue to share this campaign with your friends, family, coworkers, on social media, etc. Every little bit helps.
The campaign will remain open until November 14th -- which happens to be the first annual CCHS day.
I'm shocked by what we've accomplished in 13 days. Imagine what we can do in 3 months.
Thank you from the bottom of my heart.
support cchs research is the way to get it cure