Happy 21st Birthday to Noah

We want to take a moment to share with you what would have been Noah’s 21st Birthday. Today has been spent enjoying the foods she loved with a cheers in her honor. It’s been a full day of reflection, stories, and full hearts knowing that her love and kindness continues to spread through all the work we do here at Live Like Noah Foundation.

Six years ago today, we launched LLN with the mission to positively affect the lives of kids and families living with congenital heart and lymphatic diseases. Your support has allowed us to fund efforts that have enabled UCLA’s lymphatic intervention team to travel to hospitals around the world, treating patients with lymphatic disease who would not have survived without these interventions. These efforts have extended to several hospitals across the United States, Argentina, and other countries, with future dates planned. While on these trips, the UCLA team is working to develop the capacity at these hospitals who will then be able to grow their lymphatic intervention programs and treat patients at their institutions. LLN has funded the broadcasting of live cases at international interventional conferences, demonstrating that these patients can be successfully treated. Furthermore, the ongoing LLN support has driven critical research to develop new techniques and treatments for these complex diseases, ultimately translating into improved outcomes and saving thousands of lives globally.

Beyond research and training, LLN has been able to provide financial grants along with emotional and advocacy support to heart and lymphatic families in need. Through the Reading Is Healing program, Noah’s stories of diversity, female empowerment, and a sense of adventure has reached kids around the world.

Her love also continues to shine through each of you. When we put goodness into the world, we keep Noah’s legacy alive. To help continue the important work we do, and in honor of Noah’s birthday, please consider making a donation today. Thank you.

With love & kindness,

Cil & Keith
Founders

“One of the most valuable things in life is
TO HELP OTHERS.”
— Noah Bella Michaelis

2024 is Off to a Good Start

From a new published book, to a poignant anniversary and festivals of happy hearts and books.

We hade a successful book launch for Manda and Fish this past November and we thank everyone who joined the Manda community and bought this book! As a self published book, it’s exciting to see Manda being picked up and sold at Moonraker Books in Langley, WA and Timbre Books in Ventura, CA (pic). 

Manda and the Fish illustrator, Claudia Pardo, with LLN Co-Founder, Cecile Michaelis at Timbre Books in Ventura, CA.

Book signing at The Open Book in Woodland Hills, CA.

Cecile Michaelis with Josh Hauser, Founder and Owner of Moonraker Books in Langley, WA on Whidbey Island.

Young readers excited to hold their copy of Manda and the Fish!!!

we continue to provide financial assistance

 
 

Because of your outstanding support, we were able to provide $10,850 in financial grants last year to heart families in need.

“I’m just filled with gratitude towards you guys. You made our Christmas happen by getting us home, and getting us to Philadelphia. I can’t thank you enough.””
— Gloria S., Heart Mom

Book Delivery to UCLA Mattel Children’s Hospital

Keith and Cecile with Child Life Specialist, Anna Pabustan inside the Child Life Zone.

We made our very first Manda and the Fish book delivery, of 25 books, to UCLA’s Child Life Zone as part of our Reading is Healing Program.

CONTINUING OUTREACH

 
 

This week we had an incredible opportunity to speak with several teams at Quest Diagnostics, among those were genetic scientists, counselors and directors, about Noah’s story and our work with the Live Like Noah Foundation. Quest Diagnostics is the world’s leading provider of diagnostic information services for 1 in 3 adult Americans. In honor of heart month they invited us to speak with their employees about our organization and give their employees an opportunity to learn and donate to a non-profit that supports the pediatric congenital heart community. We enjoyed being able to make an impact with this new group of highly specialized individuals in the healthcare system.

Live like noah will be at happy heart festival!!!

 
 

If you are a heart family, we’d love to see you! We are so excited to be a community partner for this year’s Happy Heart Festival on Saturday, February 24th at Edward Life Sciences in Irvine. This free event, put together by Camp del Corazon and Edwards Lifesciences, is an incredible opportunity for heart families to gather, be informed, and to have fun. We’re looking forward to meeting our big heart community! If you’re a heart family and would like to register, you can do so here. Watch this video to learn more about this wonderful event.

A valentine delivery

36 care packages delivered to UCLA Mattel Children’s Hospital on Valentine’s Day.
L-R: Keith Michaelis; Pediatric Cardiology Child Life Specialist, Rebecca Hambalek; teen mentee, Harrison Guerrero; Harrison’s Dad, Byron Guerrero; and Cecile Michaelis

Yesterday marked 15 years since Noah received her very first care package from the Hopeful Hearts Foundation while recovering from heart surgery on Valentine’s Day. It was a poignant moment to deliver care packages on this day as it’s a beautiful reminder that Noah’s message of thinking of others is still being passed down to others. We are so proud of Harrison and all that he’s done to raise awareness for CHD and carrying on Noah’s legacy of giving back to others. Harrison took on the project of having a lemonade stand and raising over $3500 for these care packages. Thank you Harrison and the Guerrero Family!!

“Fundraising for care packages, buying and putting the packages together, and then finally being able to deliver the packages for heart families in the hospital has been one of the most meaningful experiences in my life. It felt so good to know that my contributions have put a smile on so many heart families’ faces and let them know that they are not alone. I’m honored to continue Noah’s legacy and inspire others to do the same.””
— Harrison Guerrero, 15 years old

SAVE THE DATE!!
Live Like Noah will be at la times festival of books

LIVE LIKE NOAH FOUNDATION is thrilled to be chosen as an exhibitor at the 2024 Los Angeles Times Festival Books on the USC campus. Please save the date and enjoy the country’s largest literary festival! Admission is FREE. This event is near and dear to us as it was an event Noah excitedly attended and where she met her favorite author, Mary Pope Osborne of The Magic Tree House series. We’d love to see you come out in support of Manda and the Fish and Hop’s Case of Being Different. We will be at Booth #592, across from the Children’s Book stage, along side Manda and the Fish illustrator, Claudia Pardo. So come by and say hi!!! More details to come.

Noah at the 2016 Festival of Books with her signed copy of Magic Tree House #1

Announcing Our First-Ever LLN Workshop & Updates

We know it’s been quite some time since our last newsletter but we’ve been hard at work behind the scenes continuing to build upon this foundation while seeking balance in the midst of grief and the gravitational pull of life. The past six years since Noah’s death has been nothing short of self-rediscovery. The grief of losing your child does that to you, and mix it with secondary losses and one feels compelled to find a door that opens up to a path that makes more sense. To find truth in what matters and cleansing ourselves of what no longer does. There’s peace in doing this, but it’s an ongoing effort. Tai Chi has served a purpose in helping us find that balance as we continue adventuring on with self-rediscovery, stewarding this organization in memory of Noah, and finding ground with every step we take.

That said, we’d like to invite you to our very first LLN workshop, an introduction to Tai Chi, in hopes that it can also be a tool you can use to improve your mind and body balance.

We remain humbled by the dedicated support we’ve received since our foundation’s inception in 2018 and are completely awe inspired by the advancements made by UCLA in lymphatic intervention.

We are very pleased to share the following updates with you.

Thank you for taking the time to read this newsletter.

With love,
Cecile and Keith
Co-Founders, Live Like Noah Foundation

Are you looking for ways to help improve your mind / body balance?

 
 

Sign up for our four week introductory online workshop on Tai Chi. Instructed by certified Tai Chi instructor, Anthony Baclig, Noah’s uncle and head coach for the CoachArt Organization, a non-profit that teaches arts and athletics to children with chronic illness.

Learn how you can sponsor this workshop for a heart family in need.
All proceeds from this workshop will benefit Live Like Noah Foundation.

UCLA’s Pediatric Lymphatic Program
The lymphatic team at UCLA, led by Dr. Sanjay Sinha and Dr. Edward Lee, has been steadily growing — helping children, progressing their techniques and abilities, as well as training several heart centers, within the US and internationally, on lymphatic intervention. Among the notable stories, we want to highlight one recent training that occurred in Córdoba, Argentina, where Dr. Sinha and the Argentina team performed a lymphatic procedure on a young patient admitted with complex multi-compartment lymphatic disease. The Argentina team was taught many of the novel techniques Dr. Sinha and Dr. Lee have learned and developed and the patient was cured of his disease. This success, for the patient, was not possible just a few years ago, and today, this heart center is more prepared to care for these kids in a complete way.

Lymphatic training in Córdoba, Argentina.

To continue the advancements, such as those used in Argentina, the UCLA team, with funds raised from our 2022 Hike For Noah, is about to begin their first study; an imaging study to prove out a new technique to reduce a significant amount of time in the overall imaging process, removing the need for exposure under an MRI, and avoid anesthesia altogether, which reduces risk to the patient. Later this year, they will be organizing a conference and training course all while traveling to other centers to help build their programs. Your donations allow us to continue supporting the needs of UCLA’s lymphatic program in memory of Noah.

 

From left to right: Dr. Chris Smith, CHOP; Dr. Suren Reddy, UT Southwestern Dallas; Dr. Sanjay Sinha, UCLA; Dr. Yoav Dori, CHOP; Dr. Edward Lee, UCLA (not shown) who represent the lymphatic leadership in the congenital cardiology space within the United States.

 

Care Packages by Harrison Guerrero
We were honored to be chosen by 14-year-old Harrison Guerrero of Woodland Hills, CA for his mitzvah project to give back in Noah’s memory by raising funds to provide 30 Live Like Noah care packages to heart families at the hospitals. Inspired by Noah, Harrison chose to raise funds through Noah’s lemonade stand and raised an astounding $3,230. While delays happened during the height of Covid, we’re nearing the time to pack and deliver the care packages.

““Noah Bella Michaelis holds a very special place in my heart and it means so very much to me to continue her mission of helping her fellow heart patients.”
—Harrison Guerrero”

Harrison Guerrero, center, alongside his parents, Byron and Erika, top left, and his family and friends.

Harrison shopping for the care packages.

GASOLINA cafe | market | wine bar Supports LLN
We want to thank Chef Sandra Cordero of GASOLINA for choosing to support Live Like Noah Foundation during 805 Living’s Dishing Out for Charity Challenge. GASOLINA donated $1000 through the sales of Noah’s Caramel Bread Pudding. Thank you to everyone who came out to enjoy Noah’s favorite dessert!

Happy Birthday, Noah

Today marks what would have been Noah Bella’s 19th birthday. From the time Noah was born, she loved being read too. She would then grow into a young girl who fell in love with reading and writing. Influenced by the hundreds of books that lined her shelves, including the stacks on the floor beside her bed. From fantasy to mystery, to the brave protagonists and underdogs, it’s no wonder why she too became a storyteller. 

It’s through our deep love for Noah, that on her birthday, we share with you the cover art for Noah's next story, Manda and the Fish. The story's main character, Manda, shares so many qualities with Noah such as her strength and courage in face of overwhelming challenges, female empowerment, and a deep sense of adventure. This book will mark the second published book, after Hop's Case of Being Different, to be welcomed into our Reading Is Healing program. 

We had the sweetest privilege of working along side the incredibly talented artist and long time friend, Claudia Pardo, whose artistic sensibility and deep appreciation for this story uniquely captured the look and feel of all the characters and setting in Manda's world. To see Claudia bring to life such a powerful character such as Manda, was an emotional experience all on its own and we can not wait to share her beautiful paintings and illustrations with the world.

Manda and the Fish is a story about a young, Native American girl who yearns to fish like her father and brothers, but designated gender roles in her tribe keep her from exploring this dream. One morning, Manda sets out to prove that anyone should be able to fish. Little does she know how her actions that day will ultimately affect her and everyone else in her tribe.

We want thank the Oneida Indian Nation for their support and guidance in publishing this story. To our editor, Danielle Sunshine, for maintaining Noah’s voice. And to our family, friends, and supporters who’ve come along this journey with us, thank you.

To be released this February 2023. Pre-order details to be announced soon.

With love,
Cecile & Keith

2022 Hike For Noah Fundraiser Was a Success

Team Beach Hikers for Noah

It is with a full heart of humility that we thank you from the bottom of our hearts. All throughout Heart Month, 48 participants and 13 teams hiked for Noah to raise awareness and donations to support medical advancements for people affected by Congenital Heart Disease and Lymphatic Disease. Donations came from all over the country and around the world.

Ever dollar got us here. You gave generously and graciously. Thank you for allowing us to fulfill this critical need for medical advancements in lymphatic intervention. The 2022 Hike for Noah fundraising campaign was a huge success, raising $50,000 for the UCLA pediatric lymphatic team, moving them forward to conduct both research studies. Their research and developments of novel techniques will allow UCLA to provide safer early detection and highly specialized care to kids and adults like Noah. Thank you for supporting our foundation’s mission to help individuals impacted by these diseases. As Noah’s mom and dad, it’s our goal to help people experiencing these diseases live longer, better lives.

This community of ours also answered the call to help us reach our stretch goal of $6,500 for our Reading is Healing program, allowing Live Like Noah Foundation to publish Noah's next children's short story, Manda and the Fish. Manda will be released this Fall to the public and also distributed to the libraries of children's hospitals around the country.

It was such a privilege to adventure on and explore more on every path, hill, and urban street. It was a blessing of the here and now spent with family and loved ones from near and far, and friends old and new. For some, these hikes were emotional reunions. We thank everyone who participated for their dedication, hard work, and outpouring of support to honor Noah and her legacy. This experience was most humbling and one of hope to see altruism in action the way Noah saw giving back from her heart.

We close our fundraiser with a message from Dr. Dan, Noah's cardiologist:

Noah and Dr. Dan after her first Fontan surgery, 2008.

Dr. Dan Levi, Noah's UCLA's cardiologist and friend. Our hero. 

Dr. Dan has been Noah's cardiologist since she was 5 months old. He's been with us through all the ups and downs and has always been so caring, thoughtful and hopeful. After Noah passed away, Dr. Dan was determined to put together a pediatric lymphatic intervention team at UCLA in Noah's memory so they can be a prominent center for their patients and help advance the technologies of lymphatic intervention.

Dr. Dan -- we love you and thank you for your devotion to heart kids.

WE DID IT.

With the help of this incredible community, your donations, and support, we reached our goal of $50,000 and will be able to fully fund both research studies, which will be led by UCLA Mattel Children's Hospital's pediatric lymphatic intervention program. We saw the value of doing this research were we able to raise this funding in just 22 days. Kids and adults, who are experiencing life threatening lymphatic disorders such as plastic bronchitis (PB) and protein-losing enteropathy as Noah did, will have more accurate and safer diagnosis and treatments because of the research and ongoing developments of novel techniques. We are helping UCLA lead the way in lymphatic intervention.

Both Dr. Sanjay Sinha and Dr. Edward Lee, the Co-Directors of the program, have expressed their utmost gratitude. They are feeling empowered and encouraged that 2022 will be the year their program makes even greater advancements and it would not be possible without your help.

Thank you for your support and donations--We're grateful, beyond words, in making this possible.

With all this said, WE HAVE FIVE DAYS LEFT in February to fundraise.

Help us fund our stretch goal of $6500
to fund the latest project for our Reading Is Healing program.

Our Reading Is Healing program is currently funded by the sales of Noah's first published children's book, "Hop's Case of Being Different." This program provides copies of Noah's book to children’s hospitals. We've been fortunate to send Hop’s, which is in both English and Spanish, to over a dozen children’s hospitals in the US and Canada.

This year, we're excited to bring to life Noah's next fictitious short story, "Manda and the Fish," about a young Native American protagonist named Manda who's trying to break free from the gender roles her tribe follows. 

Concept drawings for Manda and the Fish. By Claudia Pardo.

Manda will now be part of our Reading Is Healing program and, with your help,
be published in the Fall/Winter of this year.

Here is a breakdown of what's needed for design, initial publication and distribution of 140 hardback books to 7 children hospitals (20 books per hospital):

Total Cost: $6500

  • Illustration: By artist Claudia Pardo (https://www.everydaybuddhaart.com)

  • Publication: Editing, cover and jacket design, interior book design and layout, bookseller catalog, ISBN assignment, U.S.Copyright registration, e-books, marketing support and materials)

  • Initial printing of 140 hardback books

  • Shipping 20 Manda books to each of the 7 designated children's hospitals within the U.S. and Canada.

We have 5 days to make this happen--Let's do this.

A Message from Our Co-Directors

We’re in the last week of our 2022 Hike For Noah Fundraising campaign to raise $50,000 for two key research studies to help improve the lives of congenital heart disease and lymphatic patients. Co-Directors of UCLA's pediatric lymphatic intervention program, Dr. Sanjay Sinha and Dr. Edward Lee, want to express their heartfelt thanks to all of our supporters. Dr. Sinha and Dr. Lee also serve as our medical directors for the Live Like Noah Foundation.

Our fundraising goal is within reach, with less than $9,000 left to fund! Our supporters have brought us to where we are today, keeping Noah’s legacy alive in helping others. Please share this great news and our fundraising link, https://app.kambeo.io/event/2022hikefornoah, to help us fully fund both studies by February 28, 2022.

With love and kindess,

Cecile & Keith Michaelis
Founders, Live Like Noah Foundation

Research Study #1 Fully Funded

You should feel proud. With the help of your donation, we were able to raise $10,000 during Heart Week to maximize the generous matching gift from Binh Nguyen and Karen Morberg-Nguyen. “We are truly inspired by Noah and the impact she has made.” says Binh and Karen. We are tremendously humbled by their matching gift and the outpouring of support from people like you. Thank you for helping the Live Like Noah Foundation during this critical fundraising week as we have now fully funded one of the research studies.

These studies aim to advance lymphatic diagnosis and treatments by significantly reducing the time to image the lymphatic system from one hour to as little as five minutes with little to no anesthesia, as well as, study the ability to dynamically image the lymphatic system with CT vs. MRI. This will highly improve the safety for each patient undergoing these scans as the hour long scans can be life-threatening for many. As the parents of our daughter, Noah, we've experienced what it is like for our critically-ill child to go through these these scary and dangerously long scans, but we have the potential to make a difference in the lives of other families. We give our sincerest thanks for helping us advance lymphatic treatments to help all kids like Noah.

“We are truly inspired by Noah and the impact she has made.”
—Binh Nguyen and Karen Morberg-Nguyen, Matching Donors

But we're not done yet--and we still need your support. We need $15,000 more to fund the second study and there are only two weeks left to go. You can help by donating again and/or by sharing the link below with your friends, family and colleagues. By letting them know why you donated and how far we've come, it can empower others to do the same. Let's do this together, let's be A Force For Good.

DONOR MATCH ALERT ❤️ = ❤️❤️

 

WOW!! What an incredible first week! We have already surpassed $10,000! Thank you, to each of you, for your passionate support and your drive to meet your goal.

We have exciting news to share with you. For CHD Heart Week, from Feb. 7 - Feb. 14, one of our passionate supporters is matching all donations, dollar for dollar, up to $10,000! Let's kick into high gear as we'll have a chance to get into the $20K mark by the end of the week.

Please ensure your story has been updated on your personal page. People want to know why you're supporting this event and what it means to you, which will help drive donations.

Your personal page, will also show you who's been donating to you and see comments they left for you!

Let's all push hard this week to max out the matching $10,000 gift--keep doing your miles, post about it, text friends and family with your link for support--We can make this happen!!

All our thanks and love,

Cecile & Keith