As the new year has begun and we slosh through feet of snow, ice and slush here in New York, I have had the distinct pleasure of sunny days and warmth through my work on Quinn Madeleine. Closing out our inaugural (half) year, the rush of gratitude and amazement at what all of the support has helped us to accomplish in such a short time is staggering - our launch, a multitude of fundraisers, recognition as a 501(c)(3) public charity, two Quinn's List Kid Wish Trips and the adoption of the 15 Jacob Sheep in honor and memory of sixteen of our Niemann-Pick Type A community babies.
Whew! Just typing it out is exhausting - and trulyhumbling. As I look forward to what is to come during 2015 - our first annual Feel the Breeze 5k, working to get access to genetic testing for high-risk individuals, a multitude of Wish Trips - I know that none of this would be possible without Quinn's inspiration and the support of our amazing community!
Thanks to you we're putting Awareness for Hope. Memories for Life. into real-life practice. And so, a big Thank You for last year ... and an enormous preemptive Thank You for the year to come.
Warmly,
Eileen Linzer
Co-Founder & Executive Director
Quinn's List Kids
Piper + Dolls (and Food!) = Love
Our second Quinn's List Kid, Penelope "Piper" Collins loves two things - dolls and food! For her day, Piper's mom chose a day at American Girl Place.
"It was a perfect day for Piper. She was able to eat lunch with a doll next to her, pick out her very own doll to take home (which was not an easy decision), and her new doll even got a new 'do! The staff at the store said they had never seen such a young baby so enamored by dolls." - Katie Collins, mom to Piper.
See photos and learn more about Piper's trip on our Quinn's List blog.Nominate a child or learn how you can help another child and their family create #MemoriesForLife on our website.
Jacob Sheep Project An odd discovery, members of a herd of Jacob Sheep in Texas were diagnosed with Tay-Sachs Disease, a Lysosomal Storage Disorder similar in pathology and prognosis to Niemann-Pick Type A. Researchers at Auburn University (AU), using gene therapy, have increased the life span of Tay-Sachs affected sheep by 57%! The Jacob Sheep Project - a collaboration between Auburn University and the National Tay-Sachs and Allied Diseases Foundation - offers the opportunity to advance gene therapy research for all of these diseases. Funding has been cut significantly by the NIH, and to continue the study we all needed to pitch in.
Thanks to many generous and timely donations and an amazing turn out for our Vegas Raffle Fundraiser, Quinn Madeleine is proud to say that together we have adopted the 15 Jacob Sheep to be named after 16 of our NPA babies:
Quinn Amber Trek Wylder Hanna
Kaitlyn Joao Bryce Jake
Riley Faith Damon Avelina Garrett Hannah S Leonid
A summary of the three year sheep study is available via the NTSAD Library.
Save the Date!
First Annual Feel the Breeze 5k & Fun Run
to benefit Quinn Madeleine
Saturday, May 16, 2016
Eisenhower Park
East Meadow, NY
Details to come - stay tuned...
Ambassador Corner
Each newsletter will highlight one of our amazing Ambassadors. To learn more about what we do and how you can join our team, visit our Ambassador page.Devon Perotti-Nicholes So, Eileen asked me to write about "why" I chose to become an ambassador. My first reaction was, "why not? Why would I not want to help carry on Quinn's legacy?" That cute, cute face reminds me daily that life is so precious.
I first came across Quinn's story on a Mommy Board. I had never met Eileen & only knew her from facebook. As I read her blog and saw her begin Quinn's List, I immediately looked it over and contacted one of her friends to see if it would be alright if I sent an item to help. I sent a butterfly kite to fulfill Quinn's "fly a kite" experience. The day she got it Eileen sent me a message and said "And you would have no way of knowing this but it was recently suggested that we introduce the boys more directly to the concept of the caterpillar changing to a butterfly so we can tie it to Quinn later - changing to something even more beautiful and flying away." My heart broke reading that. A few months later Eilleen & I accidently met each other in person at a vendor event. We chatted for a bit before realizing who we both were. Once we did it was one of those…. "wait,you were the one who sent the kite" & then I was all "wait, you are EILEEN!!!" After we chatted for awhile and parted ways, I thought what an amazing person she is! I looked at her and thought she is going through the worst thing in the world & yet manages to keep a smile on her face, be polite to people, keep her household running, fill up Quinn's List and I have breakdowns over traffic everyday! I felt at that moment I was meant to help, I didn't know how but I wanted to. When the QMI site launched I was reading each page and came across the ambassador section. I found a way to help. I emailed Eileen right away asked her if there was room for me, and here we are.
Quinn & The Linzer Family truly touched my heart. I've never met more of a strong, kind, amazing family then them. I can't imagine the pain they went through/go through and I thought of no better way to help them promote and support research on treatments and a cure for Niemann-Pick Disease, Type A, and to facilitate memorable experiences for young children with life-limiting illness and their families then to become a part of QMI.
I hope that my efforts will make an impact on those creating a "Quinn List" and help further research into this horrible disease.
#WearThatYouCare The 8th annual World Rare Disease Day will be held on Saturday, February 28, 2015.
World Rare Disease Day is an annual observance held to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare diseases and their families.
