RETT SYNDROME SUMMER FACT

OVERHEATING IN THE SUMMER!
Most girls with Rett Syndrome do not sweat, so they can’t control their body temperature. This is due to issues with their autonomic nervous system. In hot temperatures, it is easy for them to overheat and get heat exhaustion in a very short period of time. Remember to take cooling pads, fans and lots of water/liquids, when your Rett child needs to be outdoors this summer. If your child shows any symptoms of overheating or heat stroke, please seek immediate medical assistance. 

---

LOOKING FOR VOLUNTEERS FOR 2018 SRSA CONFERENCE COMMITTEE!

If you are interested in coming aboard and helping with the 2018 conference please let us know as soon as possible. Most meetings are held via conference call, no travel is required until conference time. We are looking for people who are eager to work and put together a great conference! SRSA would like to have a complete committee by August 13, 2017. So please let us know today!

---

FAMILY PICNIC/GATHERINGS

Since the 2017 SRSA conference was not held this year. SRSA has offered each state in our region $500.00 to host a family event. The deadline for requesting this money is September 30, 2017. Please let us know if you are interested in additional details, to host an event in your state. 

---

MARK YOUR CALENDARS!
The Alabama Rett Family Picnic is being postponed until next spring. Instead there will be a family get together to celebrate the UAB Rett Clinic being named a "Rett Syndrome Center of Excellence", on Saturday, September 9, 2017.  Additional information will be released soon. Please save the date!

---

Just in from Dr. Percy....

"We are having great difficulty enrolling girls in the clinical trials, specifically now the Newron trial. They have approval to reduce the age limit, but we have not seen a protocol yet. The plan was to complete enrollment by Novemb...er, but we are stuck on 4 and most US sites are even behind us. This is a very general issue. If no one enrolls in clinical trials, we will not find effective agents to improve the future of girls with RTT. Ultimately, pharma will lose interest because nothing is happening

Please spread the word.

We were hoping for 12 at UAB, but this a national problem. The target number was at least 80. This is an international study: four sites in US, one in Italy, one in India, and possible two in the UK. That would be about 10-12/site if equal enrollment were achieved. The current age is 13 to 50, but the sponsor has approval to revise the protocol to 6-50. We do not yet have a new protocol.

This is the Sarizotan trial for breathing issues. The girls must have prominent breathholding.

Per Dr. Percy and Jane Lane, if Rett families cannot support studies and Rett research, the drug companies will eventually move on to disorders that do participate. Please call and see if your child qualifies to participate in this important study.  Jerry Childers at UAB Rett Clinic: (205) 996-4927.

---

HIKE FOR JULIE GRACE!

We would love to send the guys some encouragement as they tackle the Pacific Crest Trail to raise $250,000 for the Dr. Alan K Percy Endowed Professorship. Children's Hospital is matching this $ for $! Please PM Julie's Army of Hope a picture of your sweet angel, her name and where you live, and we will make a graphic to share on FB and on our website. To give directly, please click here: http://give.childrensal.org/site/TR?team_id=1420&fr_id=1040&pg=team

For more info please go to: www.juliesarmyofhope.org

Please share, share, share! #hikeforacure #curerett #menonamission

---
---