26th Annual Conference - 2010
The IRSF annual education conference is the only one of its kind where parents and professionals of girls and women with Rett syndrome come together from all over the world, under one roof, to learn the most current recommended care and advocacy strategies for every stage of life, and hear first-hand the latest in research and clinical trials.
ON-DEMAND Webcast registration includes:
- (1) "virtual seat" to continuous on-demand web access to the 14 sessions presented on Saturday, May 29, 2010. These sessions will be accessible online starting mid-June 2010, and will continue through mid-September 2010. Click here to register.
- PDF copies of Conference materials and the Helping Hands Keepsake Journal
- IRSF will email access information as soon as the on-demand sessions are available
* Technical requirements: a relatively new MAC or PC that can handle audio/video play, with high-speed internet connection (**dial-up will not deliver a satisfactory viewing experience**), and connected, powered audio speakers.The May 28-31, 2010 conference held in Colorado Springs, CO was one of the best attended conferences in years. The evaluations rated the conference tops, especially for newly added programs such as onsite Respite, and the live streaming webcast package that enabled virtual attendance from around the world. IRSF thanks our internationally recognized panel of speakers, planning committee members, professional exhibitors, regional representatives, board of directors, Cheyenne Mountain Resort staff, Tribute Reception award recipients, entertainers, auction donors and bidders, our design friends at Paradowski Creative, and most of all, the hundreds of families and attendees, for making this an incredible, powerful conference.
* See www.rettsyndrome.org/conference for the Saturday session program and speakers.
All materials will be available shortly! For those unable to attend, or for the attendee wishing to take home the information learned, the video-recorded sessions (Saturday) and audio-recorded sessions (Sunday) will be available for purchase shortly through the IRSF Store. And the majority of speaker slides and handouts will be posted at no charge to this webpage in coming weeks (these pair especially well with the audio recordings).
Check back regularly for updated information on session recordings, and future conference planning. For now, please read through the program posted here to anticipate which session recordings you are interested in, and enjoy reading the incredibly heartwarming Helping Hands Keepsake Journal – thank you again to all who contributed to this inspiring journal of Hopes and Dreams.
IRSF Conference Program 2010 2.48 Mb IRSF Helping Hands Keepsake Journal 2010 13.20 MbThe IRSF conference provides families and caregivers with hope, inspiration, and the power of accurate information needed to achieve our dream of reversing Rett syndrome in our loved ones, how to keep her healthy and how to have endurance along the way. Beyond the actual learning of information, it is the contacts and relationships made face to face which you will carry back to your personal and online communities and support networks.
Featured this year:
- Motivational keynote by Colorado’s own Susan Zimmerman, author of “Keeping Katherine”
- Leading Communication trio Linda Burkhart, Pati King-deBaun and Judy Lariviere
- World-renowned treatment experts and centers such as the Baylor College of Medicine Blue Bird Rett Center in Houston, University of Alabama Rett Clinic in Birmingham, Albert Einstein College of Medicine Rett Center at Montefiore, and more
- Sessions on therapies, recreational activities, marriage and family strengthening, financial and legal life planning
- Direction of research from leaders who have been with us from the time the syndrome was named, to finding the gene, to reversing symptoms in the lab, to keeping Rett syndrome in the forefront of neuroscience discoveries, hosted by IRSF’s own Chief Science Officer Dr. Tony Horton
- 2010 Conference Program 2.48 Mb
- Can't attend in person? NEW this year - SATURDAY sessions broadcast via LIVE webcast. To register for live streaming Saturday sessions click here! Early Bird Rates available NOW through May 9th.
Financial Planning for Onsite Attendance or Webcast Package
- Always check with your child's Case Manager first as she may have info for financial resources to attend conferences
- If your child has a DD Medicaid Waiver you may stipulate some waiver funds for "Family and Caregiver" training which will pay for conference fee
- Check with local "First Steps", Early Intervention, Mental Health Assoc. to see if funds are available
- Contact the Governor's Planning Council- Family Consumer Involvement funds on the website to apply for a grant
- Check with INsource to see if funds are available (can Google or search)
- Always check with the local clubs to see if assistance is available such as Elks Club, Lions Club, and Knights of Columbus
- Ask family members to help financially with your ISRF conference costs in lieu of birthday, holiday, anniversary etc. gifts
- Conference Widget
|
Gastroenterology for Rett Syndrome by Kathleen Motil, MD, PhD Click here to access complete information including videos from last year's conference.
25th Annual Conference - 2009
Over 250 parents, caregivers, and professional attendees from all over the world came together to meet with over 50 Rett syndrome experts and exhibitors for learnings and celebrations at the very special IRSF 25th annual education and awareness conference in Leesburg, Virginia over Memorial Day weekend May 23-26, 2009. If you missed this fantastic conference, want to revisit a session, or need to catch one you missed, you can experience it just like being there by purchasing the session audio CDs or MP3s from Aurora Recording. Listen while you read through the speaker handouts, many of which are posted below. Slides are listed in order of the program sessions.
IRSF 2009 Conference Audio Recording Form 2009-06-23 05:15:55 131.87 KbRevisit Conference – View our Photo Album
See table below to download and treasure the Helping Hands Keepsake Ad Journal. This was a first of its kind – now that you see what it’s about, start planning your ad for next year’s conference journal
Save the Date: 26th annual conference Colorado, Memorial Day Weekend, May 28 – 31, 2010
“Celebrating the Torch Within” session downloads:
Speaker slides are posted below for all sessions where visuals were used and permissions were given for public sharing of the material.
2009 – “Celebrating the Torch Within” – Leesburg, VA
2008 – “Together We Are Better” – Chicago, IL
2007 – “Reach Me, Teach Me” – Atlanta, GA
2006 – “Bridges of Hope” – San Francisco, CA
2005 – “Trails to Discovery” – San Antonio, TX
2004 – “Believe in Better Days” – Baltimore, MD
2003 – “Ship Shape for Caregivers” – Bahamas
2002 – “Empowerment” – Chicago, IL
2001 – “Possibilities” – Washington, DC
2000 – “Hitting the Jackpot” – Las Vegas, NV
1999 – “Meet Me in St. Louis” – St Louis, MO
1998 – “Grass Roots” – Charleston, SC
1997 – “Keeping Afloat” – Bahamas
1996 – “Spirit of ‘96” – Boston, MA
1995 – “A Road Less Traveled” – Minneapolis, MN
1994 – “A Decade of Caring” – Chicago, IL
1993 – “Stepping Stones” – San Diego, CA
1992 – “New Horizons” – San Diego, CA
1991 – “Up, Up and Away” – Denver, CO
1990 – “Family Ties” – Washington, DC
1989 – “Hope for Tomorrow” – Washington, DC
1988 – “Rett Families Conference” – Houston, TX
1987 – “RS Diagnosis & Management” - Houston, TX
1985 (November) – “Rett: A New Syndrome” - Baltimore, MD
1985 (January) – “No Longer Alone” - Baltimore, MD
