Lauren Savino's Legacy (CCHS)

$15,342 of $20,000 goal

Raised by 230 people in 39 months
Hi. My name is Kim. On Sunday, August 9, 2015, I lost my little sister Lauren Savino to a rare disorder called CCHS (Congenital Central Hypoventilation Syndrome). She was 29 years old. She leaves behind McKenna, age 7, and Elena, 11 weeks old. McKenna also has 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

http://abriegrowsinbrooklyn.com/post/126339560427/in-memory-of-lauren-savino

http://www.cchsnetwork.org/

http://www.cchsnetwork.org/advisory-board/cchs-foundation

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Hi Everyone,

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.

http://news.yahoo.com/meet-people-living-deadly-200-151911321.html
http://www.ventnews.org/#!ventilator-assisted-living-29-5/c1nr3

Thank you all so much.

With love,

Kim


PRESS RELEASE:

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
E-Mail: mycchsfoundation@gmail.com

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.
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Thank you all for your continued support. With your help we are 3/4 of the way towards our monetary goal.

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
McKenna being a great patient
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I was hoping that I'd only be giving happy updates. Like updating you on McKenna's first week of 1st grade -- she had friends in her class, made new friends, and played in the sandbox every day -- or, sharing happy memories of my sister Lauren with you -- like the photo of her and McKenna walking down the aisle at my wedding two years ago yesterday (she never did know how beautiful and loved she was) -- and that there were only some hiccups this week, like when the nursing company sent a completely unqualified nurse to the house one day, so McKenna needed to stay home from school that day. Just one of the many frustrations of dealing with CCHS (fighting with insurance companies, medical supply companies, nursing companies, schools, doctors, etc...)

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:

http://youtu.be/lYYZF2am1GM

#CCHSin4theCure #CureCCHS #live4lauren
Lauren and McKenna
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In 13 days we have raised $13,351 from 205 people. This campaign has been viewed over 7,000 times, and shared on Facebook by over 1,000 people. This is incredible. I am so thankful for everyone's generosity, and for the fact my sister's story, and the story of all people with CCHS, is spreading. Raising awareness is the only way we'll raise the funds needed to find a cure to make a better quality of life for all with CCHS. I will never give up hope!

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.

Love,

Kim
Princess Elsa, I mean McKenna.
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Read a Previous Update
Letty Kaos Clark
39 months ago
4
4

I wish i could leave a donation......maybe at a later time. Just wanted to leave my well wishes from the May mommies group.....those girls and your whole family are in my thoughts I'm so sorry for your loss

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Charles S. Yang
39 months ago

support cchs research is the way to get it cure

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$15,342 of $20,000 goal

Raised by 230 people in 39 months
Created August 14, 2015
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MP
$30
Mandie Porter
18 months ago

My daughter is five weeks old and in the nicu. They think she has cchs,her testing came back negative for the gene mutation but still shows similar symptoms. This is a scarey disorder. I pray for your family.

$50
Anonymous
36 months ago
$30
Anonymous
36 months ago
EP
$50
Eric Pasinkoff
38 months ago

in memory of Lauren Savino

$100
Anonymous
38 months ago
DP
$50
Debbie Potash-Turner
38 months ago

Thoughts and Prayers to entire Savino family. And wishing McKenna good health!

KM
$100
Kaitlyn McIvor
38 months ago

I wish I could do more but I'm always here for you guys! She's a strong little girl that will do just fine! Eddie if you ever need me you know where I am! Always in our thoughts & prayers ! The McIvors

$40
Anonymous
38 months ago
$100
Anonymous
38 months ago
SL
$100
Stephanie Lewis
38 months ago

My daughter Annie met McKenna at the Drs office and all I knew was she was from Chappaqua. Annie has told me constantly how nice she was to her. Annie has an autoimmune kidney disease and McKenna watched Annie and helped her during all her vitals. I had no idea about all of this. She was with her grandma. Anything we can do to help please let me know. Stephanieblewis@yahoo.com or if she just wants to play with Annie. Wishing you the best.

Letty Kaos Clark
39 months ago
4
4

I wish i could leave a donation......maybe at a later time. Just wanted to leave my well wishes from the May mommies group.....those girls and your whole family are in my thoughts I'm so sorry for your loss

+ Read More
Charles S. Yang
39 months ago

support cchs research is the way to get it cure

+ Read More
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