I had the incredible opportunity of working with the Inspiring Prendiz Family on the Hope for SMA Gala. The Prendiz family organized the entire event and the night could not have been more perfect. The Hope for SMA Gala was held in memory of beautiful SMA Angel Hannah Rose on her second birthday. The event was held to bring HOPE for all of the families who have lost a child to SMA and to the families who currently are living with Spinal Muscular Atrophy. Dr Brian Kaspar was in attendance and gave a wonderful speech on the current state of his program. It was incredible to see all the SMA Families talking to Dr Kaspar in a personal setting. When a person speaks to Dr Kaspar it is very clear that he is a passionate, honest, and intelligent researcher who has become attached to so many of our kids. We are honored that he is working so diligently on bringing forth a treatment for our community.
There were 11 SMA families in attendance, and it was a great opportunity to meet our extended family living on the other side of the country. Although there are thousands of miles between us I felt such a closeness to these families. It was like we all knew each other for many years. I felt so comfortable in their presence and nothing was forced, our conversations just seemed to flow so easy.
There was an amazing collection of SMA collaborators. The Damnwells performed at the Gala. Many of you know the Damnwells from their upcoming album Lullabies for Getty with a portion of the proceeds going to SMA Research. Sarah from SAYWHAT creations was in attendance. Sarah is the creator of the SMA-A-WEARNESS line of Jewelery inspired by SMA mom Krisitn Banjany with a portion of every sale going to The Sophia’s Cure Foundation. Sarah set up a booth at the Gala where all of her beautiful jewelry was on display. The whole crew from Repeat Possessions was in attendance. Repeatpossessions.com is donating a portion of sales to The Sophia’s Cure Foundation. I also want to thanks Maureen Cohen for donating Flight Lessons and a Flight to Santa Barbara for our auction at the Gala.
It was such an amazing night and I was honored to take part in this wonderful event. The Hope for SMA Gala was a huge success. There are still sponsorships and donations coming in from the night and we will update with a final total in the near future. Thank you to everyone who took part in this magical night!