October is Rett Syndrome awareness month, but apparently so is February for Team Magnolia’s Hope. Wow, just wow! I am speechless with the amount of support, love, community, awareness and fundraising we just received this past month. It almost seems as Continue Reading
Soupergirl
If you don’t know, this past month there have been some amazing gestures of kindness and generosity towards us. A few months ago, a mom from Washington DC, Sara, contacted me. Her mom, Marilyn had forwarded her an article I Continue Reading
An Incredible Adventure
We are committed to giving Maggie typical experiences and a life full of incredible memories. She deserves it and it’s one thing that keeps our life feeling typical as well. We have been planning to go on a ski trip Continue Reading
Maggie’s hero
This past week, Maggie needed to dress up for school as her hero or a hero. When I found out, I asked her, do you want to dress up as Elsa or Merida, we have both costumes and they are Continue Reading
Being her voice
I read a news story recently that frustrated me to no end. It reminded me how far we have to go to get to real understanding of patient rights and saddened me for this family. A girl, living with Rett Continue Reading
Diagnosis day – four years with Rett Syndrome
Maggie was diagnosed on 12/17/2013. This day is known as D-day in the world of Rett. Diagnosis day. This will be year 4 since diagnosis. Maggie is now 7 years old. Life is different now. Four years ago, Maggie hadn’t Continue Reading
In the holiday spirit
For the past four years, the holiday season has been one that we have dreaded. What should be a joyous and uplifting time of year, is filled with pain and sadness. AJ and I push through each season and take Continue Reading
Soccer season success! Buddy included….
Warning! Cute post alert! Maggie played soccer and had the time of her life. We became a soccer family and it really brightened up our Saturdays. To be able to go to the soccer fields and have Maggie play and Continue Reading
Celebrity Campaign for Rett Syndrome!!!! #reverserett
[embedyt] https://www.youtube.com/watch?v=6QRk1fgEuRU[/embedyt] Today, a celebrity campaign launches to invite the world to help Reverse Rett. A long list of stars including Sofia Vergara, Matt Lauer, Sarah Silverman, Casey Wilson, Paul Scheer, Billy Eichner, Kristen Schaal, June Diane Raphael and Nick Continue Reading
Reverse Rett LA
On October 13th, the Rett Syndrome Research Trust’s largest annual fundraiser will take place in Los Angeles. Jenny and I are co-chairing this year in addition to chairing the auction. We have set a goal of raising $1MM at this Continue Reading
