2018 Conference Report

The Choroideremia Research Foundation hosted our bi-annual conference CRF 2018 in Dallas, Texas

on June 21-24, 2018. There were over 217 individuals that attended the conference.

To kick off the event a welcome reception was held for all attendees, which gave everyone an opportunity to mingle and meet the many first-time attendees and reconnect with old friends.

Throughout the conference, presentations were given from several world-renown researchers on the latest scientific updates. Jamie Ring and Dr. Tomas Aleman from Spark Therapeutics, Andreas Wenzel from 4D Molecular Therapeutics – Roche, and David Fellows representing Nightstar Therapeutics all shared updates on gene therapy trials and some

very promising treatments that are in the pipeline. Clinical trial participants also shared their experiences and took time out to answer questions from the audience.

Dr. Divya Sinha gave an update

on the latest stem cell research, and Dr. Jean Bennett talked about the next steps in gene therapy for CHM. She shared some information about RPE 65 and the lessons learned from that trial, and all the CHM trials

Lin Ogg and Eric Hartman talked about adaptive technology and utilizing electronics, and a few members from the Fundraising Committee shared some excellent information and suggestions for fundraising.

Breakout sessions for affected CHMers and their families were also held, as well as Q&A sessions.

The conference ended on a high note with a closing reception and auction, which raised $6,177 for the CRF! The positive feedback we received about the conference was fantastic and everyone walked away with the latest updates and a renewed sense of hope for the future!

Comments from Attendees:

It was wonderful to meet people who are going through the same thing, and to hear information about ongoing research. I think being aware of what’s going on is important and helpful. I also think it’s good for our loved ones to see us learning and being involved in their healthcare.

One of the most valuable parts of this experience is to learn how CHM has effected other people and what they are doing about it.


Many thanks to our official 2018 sponsor, Nightstar, Ltd and our other conference sponsors Spark Therapeutics, UPenn/CAROT, PTC Therapeutics, 4DMT, Roche Pharmaceutical, the Oster family, the Cunningham and Pettipaw families as well as numerous other donors.


What will you see at the CRF Conference?

The Choroideremia Research Foundation hosts conferences every two years with multiple presentations by World renown researchers and the latest scientific updates.  These conferences are an incredible opportunity to learn about treatments in the pipeline, to gain a more in-depth understanding of CHM, and to connect with an amazing network of individuals and families who are also impacted by Choroideremia.

2016 Conference Review

Choroideremia Research Foundation conference and symposium at the Westin Hotel in Westminster, Colorado on June 17, 2014. Photo by Ellen Jaskol

The Choroideremia Research Foundation hosted our bi-annual conference, CRF 2016, in Philadelphia, Pennsylvania on June 23 – 26. There were over 270 individuals that attended the conference.

CRF president, Dr. Chris Moen, presented science and FDA updates, followed by Dr. Tomas Aleman’s talk on understanding choroideremia. Dr. Katherine High and CEO Jeffrey Marrazzo representing Spark Therapeutics, and CEO David Fellows of NightstaRX updated the audience on their respective gene therapy trials. CHM gene therapy clinical trial participants spoke about their experiences, and graciously answered questions from the audience. Team CHM’s Danny Boren and Jen Price gave the audience a very lively and helpful fundraising session. Adaptive Technology, how to utilize smart phones and other electronics in your daily life was presented by CRF Executive Director, H. Eric Hartman, and Dr. Gregg Pusateri. Doctors Chris Moen, Albert Maguire, Tomas Aleman and Robert Maclaren sat on the Doctor is In panel, where the audience enjoyed the opportunity to ask numerous questions. The attendees were enlightened by attorney Timothy Holly during the Employment Disability Law session. 4D Molecular Therapeutics President/CEO, David Kirn, spoke about Evolving Gene Therapy, and 4D’s plan to conduct a clinical trial in the near future.

Throughout the conference at breaks, the opening night pizza party, and the closing night dinner and auction, attendees took the opportunity to chat and mingle with the doctors and researchers, connect with old friends, and meet our many first-time attendees. Often the conversations included comments of how great the overall conference was, and looking forward to 2018.

We tried something different this year with the bottle grab and raised $830. Participation was fantastic. We had 42 bottles/packages donated.

The auction at the gala was amazingly successful again this year. Donations ranged from food baskets from different cities, art, jewelry, vacations, sports memorabilia, barware, and more. At the end of the night, the auction raised $7,695. Adding together the moneys raised at the bottle grab, auction, merchandise sales and gifts, we raised over $10,000.

Comments from Attendees

“The sessions were all great and the science updates renewed my hope for our collective future.”
“What a fantastic conference in Philadelphia! This was our first conference and we learned so much. Can’t wait for the next one!”
“Such an inspiration to be around an incredibly driven group of dedicated families and researchers.”
“This was our first conference and not only did we learn a lot we met a bunch of ‘extended family'”
“Thanks to all my friends at our conference here in Philadelphia. It was a great pleasure to meet you all here and many thanks for your kind welcome. Hope to see you in Germany.”
“I enjoyed the CRF Conference. There is hope for a cure of CHM. Everyone I met was so nice and welcoming. Looking forward to the next Conference in 2 years.”
“We had a fabulous weekend at the CRF Conference. We learned a lot, but more importantly met a lot of great new people. It is an incredible group and we are thrilled to be a part of the family!!! Can’t wait until the next meeting.”

2016 Conference DVD’s now available! This 4 DVD set contains sessions on research updates, independent living and the now-traditional “The Doctor Is In” open Question & Answer session. The price is only $15 and includes shipping. Excerpts of many of the sessions will soon be on our YouTube Channel. Click Here to order your DVD’s.

Thanks to our Official 2016 Conference Sponsor!