Phew….so much going on!

There has been SO many big things going on around here these past few days, it is crazy!

• Rare Disease Awareness event at the kids’ school is becoming bigger and better than I ever could have dreamed.   The enthusiasm and support from the principal and the staff has been overwhelming and exciting!   On 2/25, all the kids are encouraged to wear denim jeans for “Jeans for Genes” day in honor of Hannah and the other local children battling rare diseases.  The 3rd through 5th graders, all 450+ of them are going to be making bracelets for the 7000 Bracelets for Hope campaign.    The K through 2nd graders are going to be coloring ribbons and creating messages of hope to be given to the Children’s Rare Disease Network.   This event has turned into something just incredible.  My only fear….that the 12,000 donated beads we need for the school get here in time for the event!   Possible local print and TV media coverage.
• Rare Disease Awareness fundraiser at Hannah’s clinic, Children’s Specialty Center, on 2/28.   The clinic has been in the process of creating the first rare disease specialty center in Nevada for the past year.   Hannah is the official poster child literally, for this fundraiser where the are encouraging all medical staff in the entire medical plaza to wear jeans AND purchase from a gourmet paddy wagon that is donated proceeds of their sales to the clinic’s formation of this new unit.
• Make-A-Wish appointment all set!   Hannah was approved for a “Wish” from Make-A-Wish.  Kind of bittersweet because in one respect you hope she gets denied because her condition isn’t serious enough for a wish, but it is exciting that we will be able to give Hannah, Ethan, and Abby something they will always remember.   Something fun.  Something together as a family.
• World Lysosomal Storage Disease Symposium this week.   All the Gaucher experts around the world are coming to Vegas tonight for the 3-day conference beginning tomorrow.  I am so excited to be able to see Dr. Goker-Alpan, Dr. Sidransky, and Dr. Schiffmann again.  I’m also very excited to finally get to meet Dr. Weinreb for the first time who has been one of Hannah’s biggest supporters since we started emailing 2 years ago.   The only negative is that our normal Thurs-Friday nurse is out of town this week so I may not be able to get to the conferences I want to see, but we are working on it.    Possible media coverage here too!

I’m sure I’m forgetting some things, but it just has been absolutely crazy around here.    I am really looking forward to the conference tomorrow and introducing Hannah to some of the world’s best Gaucher researchers — all right here in my own backyard!