Save the Date! HHW2018

Hello Friends! It’s almost Henry’s birthday, which means Happy Heart Week is in 1 short week! It's the 5th Annual...can you believe it? Just a quick note to say hello, and to be expecting some great info coming your way about Barth Syndrome and how you can potentially save some lives, including our Henry’s.


Many of you may be wondering why we are not having an actual event...well, to put it shortly, John and I decided it would not be best for Henry at this time in his life. I am actually quite bummed, but know with certainty that this is best for Henry right now. We are however, still very excited for Happy Heart Week and the change, power, and good that will come from our community rallying together for an important cause so very near and dear to our family. It is such a special week, and we hope that you feel that way too 😊


I am asking that you thoughtfully consider in this coming week how you could help. May it be a monetary donation, sharing this important info with your networks, or simply taking the time to educate yourselves (detailed educational information will be sent directly to your inbox 😉), please take a moment to think on how you might participate this year...

• Make sure you “like” our Happy Heart Walk Facebook page
• Think about how you can financially support the good work that the Barth Syndrome Foundation is doing to actively find a treatment or cure
• Ask your employer about a matched donation...many companies gladly do this and it is an amazing way to double your donation!
• Send some positive thoughts Henry’s way next week, wishing him another year of happiness and health. 
• Check out www.happyheartwalk.com to read our story and hear why we are on this mission

Our goal is to inform you about Barth Syndrome...the more people that know about this disease and have an interest in helping, the closer we are to a cure. And we'd love to exceed the incredible amount that we raised last year for the Barth Syndrome Foundation...$50,000. Please help us do it :)