Friends, we have the opportunity to do some really great things for our kids and the Pfeiffer community!
There were times when we felt so alone on this journey. But, that is certainly not the case anymore! We continue to meet families living with Pfeiffer syndrome, and we have reached SO many people who had never heard of Pfeiffer syndrome! Last month, I was honored to meet Carolina Sommer, a fellow Pfeiffer momma who is doing amazing things to support the Pfeiffer community. She and her husband are in the final stages of launching their non-profit organization, Born a Hero. This non-profit is dedicated to fighting for Pfeiffer syndrome, and I couldn’t be more proud to have to opportunity to work with them and help them in any way I can.
This past week Carolina was on Capitol Hill for Rare Disease Week, and spoke with members of Congress, National Institutes of Health, National Center for Advancing Translational Sciences, National Organization for Rare Disorders, and the Food and Drug Administration about Pfeiffer syndrome. This is so amazing in and of itself, but Carolina also met with Devaveena Day, a research Fellow at Harvard. She has offered to conduct a research study for Pfeiffer syndrome with Born a Hero. The fact that she offered to do this is a HUGE deal!
This is where we need you! If you or your child has Pfeiffer syndrome please email firstname.lastname@example.org your name, e-mail, and a good contact number. Once we get everyone’s info you will receive a follow up email with a questionnaire for her to start collecting data and general history study.
Like I said, I am so incredibly honored to be a part of this, and I am so excited for the future! When I look at the history of Pfeiffer syndrome I am amazed at the progress that has been made. Pfeiffer syndrome was diagnosed in 1964; that is only 52 years ago! I can only imagine the struggle of families before that time when there were no answers, only questions.
Today, with the power of the internet and social media we have proven we are all over the world. Together we can make an impact! Please take a moment to email your info, it means so much to the future of our community.