Liv4thecure

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

www.linkedin.com

Another great blog post with a “nanny” perspective

Nanny Care and Support: A Parent's Ally in Chromosomal Deletion Syndrome Caring for a child with chromosomal deletion syndrome can be challenging, but it's also incredibly rewarding.

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!

Our March Blog post is out!

Adding Siblings to a Family with A Deletion Diagnosis 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...

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

10 Ways to Show Your Stripes this Rare Disease Day! - National Organization for Rare Disorders 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