Help Us Help Neve, and Individuals with PWS!

If you know Neve, then you know that she faces challenges every day because of her Prader Willi diagnosis. If you know me beyond my ridiculous social media tirades and stand up demeanor, you know that our family is impacted every. day. by this heinous and confusing syndrome.

PWCF is one of the best state chapters in our country, and its existence and resources were one of the primary reasons we felt safe and supported in moving our family to California in 2017. The decision to uproot was scary, but every email I sent to this group of complete strangers was answered. When we got here I was lucky enough to spend an hour on the phone with former head of PWCF, and warrior advocate mom, Lisa Graziano. We have since attended the annual state conference to learn more about treatment options, clinical trials and more. We depend on the organization's COMPLETELY FREE school trainings to teach Neve's team at school (every year) what PWS is, how to keep her safe, and for guidance with her IEP(Individualized Education Plan). Last fall we went to a Behavioral Management Training (led by Lisa!) in San Diego that completely changed the way we interact with BOTH kids, and which has helped us to avoid meltdowns at home and school! They're also just Really Frickin Nice Humans, so supporting their work feels good.

Nothing about PWS has been easy, and sometimes I feel like we're all trapped in a funhouse because of how quickly and extremely things change, but I cannot overstate the importance of PWCF.

Please, Walk with us on August 1st, make a donation if you can, and learn more about PWS, so that you can be part of the support network that keeps our family afloat.

Thanks for taking the time to read and care about our amazing girl!

We literally can't do it without you.