Thank you for supporting the AFI 2015
"Make A Miracle" Conference Hosted by
AFI and University of British Columbia
Aniridia Foundation International hosted the 2015
“Make a Miracle” conference, on August 12th – 15th, 2015 in
Vancouver, British Columbia. Our venue hosts were the University
of British Columbia Department of Ophthalmology and Eye Care Centre.
This 9th biennial conference once again brought together some of the world’s leading ophthalmologists and researchers, who shared information with each other and with the families whose lives have been impacted by Aniridia Syndrome. As with past conferences, participants were able to attend presentations by professionals and to share experiences with others who have faced challenges similar to their own. There were so many special moments during this year’s conference and the follow-up survey has validated that those who attended were impressed and inspired by their experience.
AFI would like to thank sponsors who (along with AFI) helped to fund
The Sharon Stewart Testamentary Trust
PTC Therapeutics, Inc., Accutome, Carolina Optics, Inc., MVT Canadian Bus, Inc.
Highlights of this year’s conference included:
The beautiful, welcoming city of Vancouver, British Columbia, with its spectacular sea wall, teeming with pedestrians, bikers, and restaurants provided a wonderful respite after a day filled with absorbing information. Some of the participants enjoyed strolling through unique neighborhoods and finding eclectic shops and trendy restaurants.
One day the children enjoyed a field trip to see the exciting exhibits of Science World (this field trip for the children was funded by AFI). A few parent chaperones accompanied the children and volunteers.
The Holiday Inn Vancouver Centre-Broadway was an ideal location for the conference. Families were able to enjoy the city, while only having to walk a short distance to the University of British Columbia Eye Care Centre, where some of the meetings were held.
Children were lovingly cared for by “Nannies on Call” as they were entertained by stories, games, and crafts, while their parents were attending meetings. AFI funded this program with two purposes: 1. So children could meet others with Aniridia Syndrome to develop lifelong friendships and 2. So parent(s) could meet with the experts (doctors and researchers) to be educated.
The most important aspect of the conference, of course, was the opportunity to find out the most up-to-date information on the latest research and the newest treatment options for those with Aniridia Syndrome. Researchers presented information on a number of topics, including: gene therapy, RNA therapies, Aniridia Fibrosis Syndrome (AFS), and neurological and metabolic problems associated with Aniridia Syndrome.
Distinguished physicians presented information on corneal and retinal issues, glaucoma, cataract surgeries, and offered guidelines for working through the maze of treatment options.
AFI Director and Congenital Eye Disorder Program Manager, Jill Nerby, gave an update on the Congenital Eye Disorder Program at the University of Virginia, where patients can find excellent medical care, and in some cases, the opportunity to take part in an upcoming clinical trial. She also spoke about the importance of becoming an active member in AFI and participating in the AFI Medical Registry, which gives those with Aniridia Syndrome the opportunity to directly impact the research and treatments that will lead to a cure. AFI members in the medical registry are contacted first (sometimes before public announcement) about therapies, first chance at trials and the latest information.
Small group round table discussions were one of the most popular additions to this year’s conference. The two groups, one for parents and the other for those with Aniridia Syndrome, provided each participant a chance to tell his/her story or to share with other parents the challenges of rearing a child with Aniridia Syndrome. Expressing these experiences in a relaxed, empathetic setting proved to be a wonderful way to connect and to create new friendships!
Friday night’s Gala was dedicated to AFI member Sharon Stewart, an amazing lady, who through her generous financial support has been an invaluable asset in the search for a cure of the complex birth defect that stole her vision and ultimately, her life. Both Jill Nerby and Dr. Netland, in his keynote speech, gave warm tributes to Sharon Stewart, who would have loved the fact that this year’s conference was held at her alma mater university in the city she loved. A delicious dinner, a silent auction, jazz music in the background, and even a music performance by a talented member of the AFI Medical Board, Christopher Riemann, MD, all combined to make it a very special evening.
At the Saturday morning clinic, patients, who chose to participate, were examined by AFI Medical Board ophthalmologists and given the opportunity to provide medical data to their AFI Medical Registry file, which helps researchers work towards a cure and helps them keep their “Aniridia Syndrome medical journey” in an accessible format.
As the 9th Aniridia Foundation International “Make a Miracle” conference came to a close, professionals shook hands with their colleagues, children hugged new friends (whose eyes looked just like theirs), and adults with Aniridia Syndrome and parents exchanged E-mail addresses. Each of us left with a sense of gratitude toward the group of physicians and researchers, who work tirelessly to help us, whose presentations continue to give us hope, and for the Sharon Stewart Testamentary Trust, which helped to support their work. Most of all, we felt grateful for Jill Nerby, AFI Director, for without her unwavering determination and effort, this and other conferences would never have been possible. For those who did not attend this year’s conference, I hope that you are already planning to join us at AFI’s 2017 conference. If you do, I promise that you will find a host of new friends, and that you will learn vital information that will help you face the challenges of Aniridia Syndrome. Most importantly, you will leave the conference with a much brighter outlook about your future and that of your loved ones.
Thank you to our conference sponsors!
Lions Clubs worldwide have been supportive of the visually impaired ever since 1925 when Helen Keller asked them to be the “knights of darkness.” Many AFI officers and members are Lions / Lioness giving back to their community helping the blind and visually impaired.
On Saturday, Sept 17th, the Charlottesville Host Lions Club will again host their annual golf tournament with proceeds going to Aniridia Foundation International (AFI). If there is enough response from our Aniridia community, the club may do this annually since AFI has a nonprofit presence in Charlottesville and our missions both help the blind and visually impaired.
There are several ways to support the Aniridia Syndrome mission at this event:
1) Sponsor a hole
A custom designed sign with a picture or logo and a message will be placed on the course. Tribute signs “In Honor of,” “In Memory of” or to advertise your company will pay tribute to your loved ones and let the golfers know who they are supporting. ALL hole sponsorship donations go directly to Aniridia Foundation International. Deadline for new hole sponsor signs is September 8th 10:00 am.
New hole sponsor? Donation to AFI: $125
Sponsor with last year’s sign? Donation to AFI: $100
2) Golf or register a foursome
Golf for $60 per person (includes box lunch, golfer gift, prizes, cart, golf, and range balls). If you register through AFI we will know you will be there and you will also receive a special gift from us! It would be great to have AFI represented with several teams. It is a fun event for all golfer levels.
3) Volunteer to help before or at the event
Help with phone calls, donate raffle gifts or work at the event. Call our office (434) 243-3357.