Liv4thecure

04/17/2025

FibroBiologics Files Patent For Novel Approach to Modulate Mitochondrial Activity Using Fibroblast-based Therapeutics

08/15/2024

Please take a minute to read and share!

CURE GABA-A | Amber N. Freed the founder of Slc6a1 Connect and the CURE GABA-A Chief Operating Officer participated in the Lainey Moseley movie Too Rare 2 Care.

🎬 .moseley

Lainey Moseley has given the Rare Disease Community a powerful voice with her film, “Too Rare To Care”.

This movie is a gut-wrenching yet hopeful journey that sheds light on the realities of living with a rare disease.

As a community, let’s come together and amplify our message. Just as advancements have been made in treatments for HIV/AIDS and cancer, we can push for the same progress in rare diseases. Our children deserve a better future.

Please share, follow Lainey and the film at www.TooRareToCare.com

08/13/2024

Another great blog post with a “nanny” perspective

Caring for a child with chromosomal deletion syndrome can be challenging, but it's also incredibly rewarding.

06/18/2024

Check out our newest blog post written by our own Nancy Hellman about her experiences as a physical therapist with Olivia and Wolf Hirschhorn Syndrome.

Olivia's JourneyHer name is Olivia. Initially a new referral, she now resides permanently in my heart. No, I am not her parent, grandparent, or aunt; I was her physical therapist for four and a half years.Before Olivia, I had never worked with such a tiny infant other than in the NICU (neonatal inte...

06/02/2024

Yesterday was a great day! Liv4TheCure was invited to Willowbrook Golf Course for The Smitty Memorial Golf Tournament. Each year Liv4theCure is a beneficiary of donations from the event. As an added bonus Olivia and Landon (both diagnosed with WHS) got to see each other after 5 years!

03/20/2024

Our March Blog post is out!

The DecisionOlivia was our firstborn. I know that each family has different scenarios in which their affected child may be firstborn, the only child, or somewhere in the sibling hierarchy, and the introduction of a child with a genetic deletion affects each family differently.When Olivia was born, I...

02/29/2024

Today is such an important day for everyone in the rare disease community! Show your support by wearing your stripes!

02/06/2024

We are so excited to have Saurabh Sharma join the Liv4thecure board of directors! You can learn more about him on our website: https://www.liv4thecure.org/board-of-directors-1

01/31/2024

Check out our January blog post!

A new year is often a defining moment or a catalyst for a major life change. It has significance in how our lives are marked and referenced. We often recall events by the year in which they occur. Similarly to the start of a new year, the day your child is diagnosed with a genetic deletion syndrome....

01/20/2024

https://rarediseases.org/10-ways-to-show-your-stripes-this-rare-disease-day/

The zebra, with its distinctive stripes, is the official symbol of rare diseases in the United States. While each of the more than 7,000 rare diseases is

12/28/2023

Check out our new blog post!

During this holiday season, most of us will spend time gift-giving and sharing delicious feasts with family and friends. These priceless moments get repeated yearly without ever imagining them differently. So how does it feel for individuals facing a rare condition and their families? They see the y...