Jennifer Mitchell

[Life 4 Liam & Friends @Life4Liam]

Huge thank you to everyone who helped make our bake sale a huge success! We more than doubled our fundraising goal for today. @pinkboxdoughnuts @behindtheblue_nv

#cureNPC #Life4Liam #niemannpickdisease #advocacy

[Life 4 Liam & Friends @Life4Liam]

Liam absolutely loves his occupational therapy (OT) sessions, and even with being delayed at 30 months, OT is his biggest strength. He works hard every week during these sessions, showing incredible determination. His enthusiasm and resilience shine through, making OT a vital part of his growth and development.

#cureNPC #niemannpick

[Life 4 Liam & Friends @Life4Liam]

Liam doesn’t talk yet, but he does communicate in his own special way through signs. In this video, he’s saying “I want grapes,” his small hands forming the signs with a quiet determination. His biggest struggle is with his speech; though he’s three years old, he’s at the developmental level of a 13-month-old in this area. We got Liam help early, and he’s making strides, but he’s not catching up in every way like some children do. This is a sign that his disease is exceptionally aggressive, pushing hard to take him from us far too soon. Like, really young.

Every day feels like a race against the clock, a battle we’re fighting with every ounce of hope and strength we have. But facing this difficult reality—that we might not be able to slow the disease fast enough—is a weight we carry daily.

#niemannpick

[Life 4 Liam & Friends @Life4Liam]

What a huge accomplishment!!! Liam couldn’t walk until 19 months. One of his biggest gap is physical, where he’s between 18 months and 22 months- but he is getting stronger each day. 💪🏻

#lysosomalstoragedisorder #niemannpicktypec #earlyintervention #life4liam #keepgoing #notgivingup

[Life 4 Liam & Friends @Life4Liam]

Together, we have achieved a significant victory in the fight against NPC, but our work is far from over. We dedicate this triumph to all of you who have empowered us and the incredible scientists at the Schultz Laboratory to push the boundaries of what is possible. We are now at a crucial juncture and need your help to raise the funds required to continue this vital research. Every contribution matters and will make a difference in our ongoing quest to find a cure for NPC. Please join us in sharing Liam’s inspiring story and consider donating if you can. Together, we are writing a new chapter for NPC and bringing hope to those affected by this devastating condition.

https://t.co/FFTl2vRvx0

#curenpc #RareDisease #motherhood #NPC1 #givehope #supportresearch #life4liam #rarekido #rareparent

[Life 4 Liam & Friends @Life4Liam]

Raising our voices for Niemann-Pick Disease Type-C (NPC) 💙 Join the battle against NPC and make a difference! Here’s how you can get involved. Let’s unite in the fight against NPC and work towards a future free from this disease. Together, we can make a positive change. 💙🙌

[Life 4 Liam & Friends @Life4Liam]

🔔 UPDATE about our NPC research!
This year we were able to attend to the NNPDF in Salt Lake City. It was great to meet so many wonderful families. We are so grateful for everyone working towards finding a cure for NPC. We would like to update you on our research we have been working on towards a gene therapy treatment for NPC. The cellular studies have been completed and we are finalizing the work in Niemann-Pick Type C mouse model study, which continues to look very promising! As such, the team is getting ready for the next step of a cat brain model study by injecting an NPC cat with the treatment within the next couple months! This is a huge and exciting step! Thank you to everyone who has supported us so far. Help us to continue to advance this crucial research. It's essential for finding a cure for Liam and his friends, providing hope for this generation of NPC children.

Click this link to donate ❤️
https://t.co/T38514LdRt

Click this link to learn more at 👉🏻 https://t.co/IlMss8INnI

[Life 4 Liam & Friends @Life4Liam]

Your support can make a real difference.

By donating today, you can help fund vital research, provide access to experimental treatments, and support families in need. One donation at a time, we can bring hope, joy, and brighter tomorrows to children like Liam.

Check out the link in our bio to read Liam’s story 🙏💙✨ #DonateForNPC #MakeADifference #SupportResearch #GiveHope

[Life 4 Liam & Friends @Life4Liam]

The health of children with NPC will deteriorate until ultimately Niemann-Pick Type C Disease (NPC) claims his or her life. Every day, my 2-year-old son shows me what real strength is. Battling Niemann-Pick Type C, he faces more challenges in physical activities than most kids his age. But it's his unwavering determination and zest for life that keeps us all inspired. He may stumble, but he never gives up. His fight is our fight, and together, we won't let anything hold us back.

#ourLittleHero #CourageInEveryStep #givehope #raredisease #pushingforward #rarediseaseawareness #curenpc

[Life 4 Liam & Friends @Life4Liam]

Imagine a puzzle inside your body that controls how it stores and uses certain fats. This puzzle is essential for keeping your brain and other parts of your body working properly. Now, think about what happens if some pieces of this puzzle are missing or don't work correctly. That's what Niemann-Pick Type C (NPC) is like.

In NPC, the puzzle pieces that handle fats don't work as they should. This can cause fats to build up inside cells, including those in the brain. As these cells become filled with fats, they stop working properly, which can lead to all sorts of problems.

For children like Liam with early infantile onset NPC, the situation is even more challenging, causing fats to accumulate much faster. This can affect their ability to move, talk, and even think.

Without treatment, many kids with early infantile onset NPC don't make it past 5 years old because of these difficulties. It's like their bodies are struggling to solve a puzzle that's missing crucial pieces.

But there's a glimmer of hope in the form of gene therapy. Think of gene therapy as a way to fix the puzzle pieces inside the cells. It's like giving the cells a set of instructions to put the puzzle back together correctly. This could help stop the fats from building up and improve the lives of kids like Liam.

Even though the journey is incredibly tough for families dealing with NPC, the possibility of gene therapy breakthroughs offers a ray of hope, like finding the missing pieces to a complicated puzzle and making everything better. For the families and for their kids, donate today and help of research efforts to make a gene therapy treatment happen!!!

Donate Here and let's keep the research and testing going!!!

https://t.co/FFTl2vRvx0

#curenpc #NPC1 #raredisease #dontstopthescience #genetherapy #supportresearch #life4liam #rarekido #keepmovingforward #GiveHope

[Life 4 Liam & Friends @Life4Liam]

🔵 Join Liam’s Fight Against NPC! 🔵

Liam’s story is one of resilience, courage, and unwavering determination in the face of Niemann-Pick Disease Type-C (NPC). We’re sharing his journey to shed light on the impact of this rare genetic disorder on individuals and families. Read my full story using the link in my bio.

Now, it’s your turn to make a difference. Your support can change lives. By donating, you’re contributing to vital research, resources, and support for those battling NPC every day.

https://t.co/FFTl2vRvx0

#curenpc #supportresearch #life4liam #keepthesciencegoing #genetherapy #NPC1 #raredisease #niemannpicktypec #spreadingawareness #stayconnected #keepmovingforward #rarekido

[Life 4 Liam & Friends @Life4Liam]

Niemann-Pick Disease Type-C (NPC) is a rare genetic disorder that affects the body’s ability to handle fats properly due to mutations in certain genes (NPC1 or NPC2).

Without intervention, the future for children with NPC can include:
slow to rapid regression
Wheelchairs
Tremors
Slurred speech
Cognitive decline
Loss of hearing
Inability to move
Inability to speak
Lung infections
Choking
Breathing issues
Feeding tubes
Seizures
Dementia
And in every single case:
death

Share our story with your friends and family, donate what you can, and let’s make this gene therapy treatment a reality for Liam and all other NPC children before it's too late! 💙🌟

https://t.co/FFTl2vRvx0

#NPCAwareness #SupportNPCFamilies #givehope #makeadifference #letscureNPC
#life4liam #rarekido #raredisease #fundaneed #fundacure

[Life 4 Liam & Friends @Life4Liam]

Niemann-Pick Type C is a rare devastating fatal disease. Please help us raise awareness and funds to cure NPC. Together we can beat NPC!

#nnpdf #liamstrong #life4liam #rarekido
#niemannpicktypec #niemannpickdisease #raredisease
#rarediseaseawareness #rarediseasemom #rarediseaseadvocacy #niemannpicktypecadvocacy
#curenpc #togetherwecanbeatnpc

[Life 4 Liam & Friends @Life4Liam]

“There will be no cure without research and no research without funding.”
- ARA PARSEGHIAN

What you can do to help today:
1. Visit our website
2. Donate (through gofundme, Venmo)
3. Share our story and spread the word!

#cureNPC #araparsegianmedicalresearchfund #rarekido #life4liam #niemannpicktypec #fundaneed #givehope #raredisease #spreadingawareness #rarediseaseparenting #supportresearch

[Life 4 Liam & Friends @Life4Liam]

October is Niemann Pick Awareness Month and October 19th is Niemann Pick Awareness day!

With the help of @LVMPD we were able to make this video to help share Liam’s story and spread awareness about NPC.

Please help us amplify the voices of children with rare diseases and help us find a cure for NPC!

#NiemannPickDisease #NPC #NPCAwarenessMonth #NiemannPick #CureNPC #RareKiddo #RareDisease #ChildrensAlzhiemers #SteadFamilyChildrensHospital #UIchildrens #UniversityofIowa #LVMPD

[Life 4 Liam & Friends @Life4Liam]

We love watching our son grow up. We pray everyday we can make more medicines available before it’s too late 🙏🏻🩵

#curenpc #life4liam #rarekido #npc1 #niemannpicktypec #niemannpickdisease #rarediseases #childrensalzheimers #whateveritakes #steadfamilychildrenshospital #spreadingawareness

[Life 4 Liam & Friends @Life4Liam]

We went to our favorite crepe place today, Crepe Expectations. Liam devoured his entire plate of fruit. We are grateful for the support of Crepe Expectations to help us fundraise for Liam and our cause.

#cureNPC #life4liam #rarekido #niemannpicktypec #niemannpickdisease #childrensalzheimers #rarediseasekids #findingacure #fundaneed

[Life 4 Liam & Friends @Life4Liam]

🌠 Heartfelt Gratitude and Exciting Progress Update! 🌠

As 2023 comes to a close and we reflect on the past year, our hearts are filled with immense gratitude for the outpouring of love, support, and generosity we've received. From family and friends to kind-hearted strangers who connected with Liam's story, your support has been the cornerstone of our journey in raising awareness and funds for this cause close to our hearts.

We're thrilled to highlight how much we accomplished in one short year. Through collective efforts, we have not only successfully raised nearly $60,000 for the Schultz Laboratory at the University of Iowa to start this important research, but have made strides in developing a groundbreaking treatment for Niemann-Pick disease (NPC).

Thanks to all the generous donations, the Shultz Lab has been able to develop a viable mRNA treatment, test & optimize the treatment in cell lines, and conduct preliminary testing in mice. The data and results from Dr. Shultz’s work has been very encouraging and gives us an incredible amount of hope that we are going to save Liam. Now, we're gearing up for a crucial phase of our research this next month. We'll be starting a full mouse model trial of the treatment's effectiveness, focusing on the liver of mice afflicted with NPC. This is a pivotal step in the process, bringing us nearer to comprehending the full potential and efficacy of the mRNA treatment for NPC.

Your support of our mission has been the driving force behind these milestones. Each donation, regardless of its size, has been a vital part of this success. Help us keep this extraordinary work moving forward, there is still a long way to go. The road to develop new treatment is lengthy and daunting, but with the support from each one of you, our confidence in making a meaningful impact has never been stronger.

A heartfelt thank you from our little family! Your support means the world, not just to us, but to everyone whose lives could be changed by this research.

#Gratitude #LiamsJourney #NPCAwareness #FundraisingSuccess #SchultzLab #UniversityOfIowa #mRNATreatment #ResearchAdvancement #HopeForNPC #NPCResearch #Grateful #AnimalModelTesting #MakingADifference #BTB #Behindtheblue #LVMPD #life4liam

[Life 4 Liam & Friends @Life4Liam]

Our son has Niemann-Pick Type C, a fatal condition that affects vital organs in his body and his brain.
I share this quote for everyone that might be looking for some strength. But I also share it for Liam. We can’t change the fact he has NPC, or predict the uncertainty of his future - but none of that is as important as the strength of his character. Who he is and having that inner strength will help him and us as parents to overcome future challenges.

#cureNPC #keepfighting #niemannpicktypec #raredisease #lysosomalstoragedisorder #alzheimers #liamstrong #life4liam #niemannpickawareness #nnpdf

[Life 4 Liam & Friends @Life4Liam]

We are overjoyed to announce that Liam's Luau specialty crepe will be available until the end of December 2024! Our hearts are filled with gratitude for Crepe Expectations and their incredible continued support in helping us raise funds for our son and the entire NPC community. Thank you from the bottom of our hearts!

#cureNPC #niemannpicktypec #fundraise #Life4Liam #childrensalzheimers #CrepeExpectations