Topic: Gross Motor Skills, benefits of Environmental Enrichment
Speaker: Jenny Downs, PhD Telethon Kids Institute, AU
Topic: Siblings Unique Concerns, Unique Opportunities
Speaker: Emily Holl, Director, Sibling Support Project
10th Annual Ella Foard Foundation For Rett Syndrome
Charity Golf Classic
Other event contact: John Corpus – jdcorpus5@gmail.com
Mark was a devoted husband, father and friend that touched many lives through his enthusiasm and love of life. Every job, school, team or organization that he was involved with became a part of him. He had a great ability to connect with people and shared his passion for life with everyone that he met. As a father of a daughter with Rett syndrome, Mark did everything he could to make her life better. It is in his honor that we gather his family and friends to celebrate a life well lead and to give to a cause that was close to Mark’s heart.
11:00 AM – 12:00PM Golf Registration & Lunch
12:30 PM Shotgun Start
5:00 PM Doors Open for Dinner
* Lunch, 18 Holes of Golf, Driving Range, Tournament T-shirt, Dinner, Prizes, Raffle Table, Silent Auction
Sign up as a foursome or individual
All sponsors will need to provide company logo/artwork via email to Deb McLaughlin markgolfrett@gmail.com.
All payments and artwork due April 19, 2019.
If you can’t attend the event you can still make a general donation.
Topic: Nutrition Strategies for Rett SyndromeJoin us for a great time supporting a great cause, we hope to see you on June 28, 2019!
The Rip it for Rett, hockey themed golf tournament is a blast, a great round of golf on a great course with really awesome people.
Sarika Peters, PhD, , Assoc. Professor of Pediatrics and Psychiatry & Behavioral Sciences, Vanderbilt Kennedy Center Marie Bateh, Physical Therapist and parent will explore specific domains as a framework to consider important issues and creative options for taking care of ourselves to ensure we have the energy, mindset and health needed to care for our loved one with Rett syndrome.
Our goal is to help you frame an empowered life for yourself today, while we pursue our collective Hope for better treatments and ultimately a cure for Rett syndrome. Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session.
Visit www.rettsyndrome.org/RettEd for additional 2019 webcast topics, and to access recording links from past webcasts and associated QA documents. RettEd is a monthly series featuring expert Speakers on Rett-related research and care topics, hosted by Rettsyndrome.org, to help pave your personal pathway to empowerment.
Please join us as Tim Benke, MD PhD, Director, Rett syndrome Clinic, Children’s Hospital Colorado, and Rettsyndrome.org Medical Advisor and Paige Nues, Director of Family Empowerment at Rettsyndrome.org to explore the clinical trials landscape outlook for 2020.
This live webcast will be especially helpful to caregivers who are wondering if participating in a clinical trial could be an option for their family and how to become research-ready. We will discuss what clinical trials are enrolling, about to enroll, or have closed enrollment. We will also discuss enrollment criteria, what it means to participate in a trial, and hear from a panelist of parent trailblazers whose children have participated in a Rett syndrome clinical trial to hear how they did it.
Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session.
RettEd Webcasts are a free resource designed to empower families affected by Rett syndrome and their care teams.