The Quinn Madeleine Foundation

05/16/2023

The Future of The Quinn Madeleine Foundation

It is with purpose that we have chosen to share this news with you on what should be Quinn’s 11th birthday…

After much reflection, we have decided to dissolve The Quinn Madeleine Foundation. The values of QMF - Awareness for Hope, Memories for Life - have guided our every move, beginning with its inception in January 2014 and continuing through today.

The pandemic offered a rare opportunity to pause and reassess. And with that assessment we realized that Quinn’s impact on the world should continue to evolve, just as she would have.

Over more than nine years we have completed 42 Quinn’s List Wishes, sponsored many NTSAD Camp Snuggles, identified 32 carriers of the pathogenic mutation that causes NPA*, and granted funds to a variety of proximal organizations doing research outside of the purview of QMF. QMF has also brought together communities in the name of hope and has grieved together after the losses in the name of awareness.

Though QMF will be dissolved, we are pleased to tell you that Quinn’s impact - and that of all of the babies we have served - will continue on through the amazing work of the National Niemann-Pick Disease Foundation, Inc.. QMF’s remaining funds will be used as follows:
ASMD Research FellowNewborn ScreeningContribute Findings to the International Niemann-Pick Disease Registry (INPDR)

The support we have received both as a family and an organization over the past decade+ is unmatched. Quinn may have been the impetus, and QMF her tool, but our supporters have been the drivers. Please take a moment to acknowledge what you have done for countless babies and their families; we are doing the same.

So as Quinn should be getting ready to move on from elementary school, with 5th grade graduation just around the corner, we are also graduating from a well-loved, never forgotten period of our lives.

With peace, love and gratitude,
Eileen and Brett Linzer
& the QMF Team

P.S.: NNPDF has let us know that donations can continue to be made in Quinn’s memory. They can be restricted to the programs indicated above, or sent to the general fund where the wonderful staff and BOD of NNPDF will determine the best use.

*NPA is more accurately now known as Neurovisceral Acid-Sphingomyelinase Deficiency, or Neurovisceral ASMD

05/07/2022

Hi all! Long time no speak.

I come to you today still as Quinn's mom but also as a doctoral student in Counseling Psychology. I am conducting research with a community that, particularly this mother's day weekend, is very close to my heart: Bereaved Mothers and how they developed their amazing resilience.

If you or anyone you know are willing to share the story of your child and of your own journey with grief through a Zoom interview, please click the link below to schedule or feel free to reach out to my directly.
https://bit.ly/3KN82qs
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Eligibility: 18+, living in US, fluent in English. The child's death occurred 1-12 years ago and the child was aged 6months to 12years at the time of death.

05/24/2021

Amazing news for the community, all thanks to the relentless work of Lesa and Brennan Brackbill. You may recognize the name - these are the parents of sweet Tori, number 5. You can get to know Tori and her activist parents through their Disney World wish trip. Well done, Brackbills!

http://www.quinnslist.org/2017/06/tori-meets-minnie-mouse-and-snow-white.html

Today Pennsylvania became the ninth state to include on its panel!

It took seven years, four pieces of legislation (two of which were signed into law), two determined mothers, and a great deal of work, but today that dream is a reality. ❤️

01/30/2021

Ever have a family that you look at like oh wow, that's US just a few years ago! Well, that's what the Clausens have meant to us Linzers since we had the absolute honor of working with them and rock star Bryce's Quinn's List trip back in 2019. Their wish was for Bryce to see the beach, and their trip to Florida was scheduled just weeks after Bryce made history with Bryce's Law which mandates newborn screening for Krabbe Disease - an effort that will save countless families the pain the Clausens have so gracefully endured.

The Quinn Madeleine Foundation is extremely honored to be the steward of such incredible kindness and generosity.

Thank you Joel and Andrea, for allowing us to make such a lasting connection with your incredible family.

Learn more about Bryce's trip at https://www.facebook.com/quinnmadeleineinc/posts/1092926250907717 and more about Bryce and his family at their Facebook Group at https://www.facebook.com/groups/783052145361791

11/17/2020

You guys remember Super Liam, right? Well his absolutely incredible family continues to shine light into our world and they can use our help! Please see below (and note that this family is dealing constantly with illness, loss and grief ... and still manages to make the world a much better place. So grateful for them!)

(See comments for images of Liam and this wonderful family.

11/02/2020

Hey QMF supporters! Y'all remember when Eileen O'Gara Linzer and Brett Linzer were honored with Sanofi Genzyme's TORCH award back in 2018?

Well, we are so thrilled to inform you that another of our community - Evren Ayik - was honored this year!! And wow, was it so incredibly well-deserved. Evren, who himself is affected by ASMD, has turned his experience into learning, research and advocacy for all of his peers in the ASMD community.

With his recognition, Evren was allowed to select non-profit organizations whose mission he supported to receive a portion of the award. And, Evren being the amazing, compassionate soul that he is, selected The Quinn Madeleine Foundation as one of the three non-profit organizations he wished to support.

Evren, we are so grateful to you for your work on behalf of the ASMD community, for your continued health and perseverance, and for your support of the QMF mission!

06/03/2020

05/16/2020

Quarantines, Postponements, Suspensions... Learn what's going on at QMF in response to COVID-19

04/27/2020

The 6th Annual Quinn 5K & Fun Run is postponed until the Fall as a Virtual Run only. Stay tuned for more details later in the summer.In the meantime:
Stay Well 💜 Stay Home 💜 Wash Your Hands

03/19/2020

To our families and our supporters,

Below is QMF's response to the COVID-19 outbreak. Please keep yourselves safe with hand washing, social distancing, and loads of kindness to yourselves as we move through this unprecedented event.

Love and light to all,
Eileen, Brett & the QMF Team

02/29/2020

In honor of , registration for the 6th Annual Quinn 5K & Fun Run is now OPEN!

Register at Quinn5k.org
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02/28/2020

On Rare Disease Day-eve, we are thrilled to share with you our Quinn's List Kid #40, the sweet Noelle. Noelle is especially significant in that she is a Quinn's List Kid AND she & her adorable family are also a part of our Niemann-Pick community.

From mom:
“We cannot thank QMF enough for granting us this trip. It was the trip of a lifetime. We made so many special memories as a family of 5 which we will cherish forever. Noelle loved getting to ride in her stroller, meeting Mickey, and honestly just having all of our attention for a few days! She even got to ride Peter Pan, Monster’s Inc, and Toy Story. Having some time away as a family to just enjoy time together and do something as FUN as Disneyland, which brought joy to ALL of us, was priceless. Every detail of our trip was taken care of. We didn’t have to worry about a thing. QMF planned everything and thought of every extra detail! I know our other children will always remember this special trip with Noelle and we will always cherish these photos of our time together. Thank you QMF and every donor who makes these wish trips possible!!!"

Thank you Parker Family for allowing us to play a small role in the big, wonderful life you have created for Noelle 💜
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