Blog Posts

It's been such journey with this little girl.  We are three and a half years into our rare disease journey and it has been nothing like I imagined it to be.  One thing our society doesn't talk about enough is mental health and the challenges we all have.  To say I was struggling from a mental health perspective in the weeks and months after Hayden's birth is a massive understatement.  I recognized (with the help of some loved ones) that I needed to go through therapy to get myself on the right track. In one of my therapy appointments

Starting in 2024, I began serving on the Board of Directors for the Foundation for Prader-Willi Research ("FPWR").  Why you ask?  Schaaf-Yang Syndrome ("SYS") is an incredibly rare disease that was only discovered in 2013 and doesn't have its own research foundation.  Also, SYS is defined by a mutation of the MAGEL2 gene, which is in the "Prader-Willi Region" of Chromosome 15.  As a result, Prader-Willi Syndrome ("PWS") and SYS research are closely aligned and benefit from each other. Earlier this month, there was a breakthrough drug that received FDA approval to treat the hallmark sign of PWS, hyperphagia

Every year, on the last day of February, the world comes together to observe Rare Disease Day – a day dedicated to raising awareness about the challenges faced by individuals and families affected by rare diseases. Over 300 million people globally are living with a rare disease, and research is the cornerstone of understanding and treating rare diseases. Unfortunately, due to their rarity, these conditions often receive less attention and funding compared to more common diseases. Further, on February 7th, the National Institutes of Health (NIH) announced a drastic, immediate reduction in overhead funding for universities, medical centers, and

It’s hard to believe we are on year three of our annual celebration!  This celebration was the biggest and best yet!  We had over 175 friends join us to support Hayden and Schaaf-Yang Syndrome research.  We raised an overwhelming $110,000 from your generous support!  We can't thank you or express enough gratitude.  The support we have been shown continues to overwhelm us and provides hope to Hayden and others with SYS, like Emma, who joined us for our celebration. We hope you were able to see what your donations and support have done for Hayden and the advancement of

Earlier this year, a new restaurant opened about 5 minutes from our house called bartaco.  I hadn't heard of it.  I like bars; I like tacos, so I thought I would like bartaco.  It was packed for the first couple of weeks it was open and figured it must be great because it just stayed busy!  We finally were able to go and get a table and it lived up to my expectations.  Great cocktails with fresh ingredients and great tacos with new and unique flavors.  Great atmosphere and friendly staff too to top it off! As we were

We’ve seen and heard the craze over pickleball for years now, but we have never caught the bug.  In our neighborhood, they retrofitted the tennis courts to also be pickleball courts and we are seeing people playing on them all the time!  We had been thinking of ways to continue the momentum for Faith for Hayden and engaging a different set of people that hadn’t come to our Annual Celebration event and Courtney had the idea of creating a fun, low pressure, pickleball event.  So off we ran. First, we had to learn the rules of pickleball.  What is