Blog2023-10-01T11:09:48-04:00

Blog Posts

Intranasal Oxytocin

Have you ever heard of oxytocin?  If you have, its likely related somehow to labor or childbirth.  Oxytocin has been used for a number of years to help start or strengthen contractions during labor and for some post-partum and breastfeeding uses.  However, lots of research has been done on oxytocin as it relates to social behavior as it is sometimes known as a "happy hormone" as oxytocin promotes social bonding and trust, and can reduce stress and anxiety.  In fact, a lot of oxytocin research has been done specifically for Prader-Willi Syndrome (which again is closely related to Schaaf-Yang

May 25th, 2024|Categories: General|

Cruising

Courtney and made a promise after Hayden was born that her diagnosis wasn't going to slow us down.  This means we are going to go on the same vacations that we would have gone on before she was born, regardless of how difficult it would be.  This year, we decided on a cruise for spring break, and everyone was coming.  So off to Florida we went.  For those of you who have been on cruises, the size of the staterooms leave a lot to be desired.  Let's just say, the beds, pack and play, stroller and luggage did not

April 10th, 2024|Categories: General|

Rare Disease Day – Recap

Friends and Supporters, We are overwhelmed at your support for rare diseases.  With your support, we raised awareness for 5 different rare diseases across 10 different states and 2 countries.  We hope you were inspired by the stories we told and share the hope, love, perseverance, faith, and resilience these kids show us every day. In addition to the raised awareness, we raised $10,500!  Courtney and I are happy to match every dollar you gave, bringing us to a total of $21,000!  This represents $1,500 for each story we told you.  We are so grateful for your support.  This

March 7th, 2024|Categories: General|

Rare Disease Day – Hayden

Friends and Supporters, Today is February 29th, the rarest day of the year, where the world is celebrating Rare Disease Day.  Rare Disease Day is a globally coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Across the world, over 300 million people are living with a rare disease, of which 72% are genetic diseases. Our Rare Disease Day campaign comes to an end today where we have told you 14 stories of rare diseases spanning 10 different states, 2 countries, and representing

February 29th, 2024|Categories: General|

Rare Disease Day – Dr. Schaaf

Friends and Supporters, Today is going to be a little different post than the previous 12.  We aren’t going to highlight a child with a rare disease, but rather a researcher and his team that are working hard to understand, find therapeutic treatments, and find a cure for rare diseases.  That researcher’s name is Christian Schaaf.  Sound familiar… Schaaf-Yang Syndrome (“SYS”).  Yep, that guy. I want to give you a sense of who Christian Schaaf is through a couple of short stories. The first occurred in the days after we received Hayden’s diagnosis.  Through Google searches we quickly found

February 28th, 2024|Categories: General|

Rare Disease Day – Emma

Friends and Supporters, Today we get to bring you the story of Emma from Chicago.  Emma’s parents, Justin and Kim, were the first family we met when we entered the Schaaf-Yang Syndrome (“SYS”) community.  They take advocacy for Emma to the next level.  Their annual fundraising event “I Gotta Guy Sausage Festival” has raised over $1 million to fund SYS research.  I went last year, it was amazing.  The SYS community truly wouldn’t be where it is today without their commitment.  We are inspired by them, and their efforts are a big reason we started Faith for Hayden. Emma

February 27th, 2024|Categories: General|
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