The Association for Retinopathy of 
Prematurity and Related Diseases

ROPARD News Letters

The 2006 Children’s Vision Award

Erik Weihenmayer, mountain climber and world-class sportsman, motivational speaker and author, was the recipient of the Fourth Children’s Vision Award.  Erik’s attendance at the event was a great honor for ROPARD. 

Erik suffered from X-linked retinoschisis and became totally blind when he was thirteen years old.  However, this physical setback did not restrict his activities.  With the encouragement of his family, Erik has forged a remarkable life, overcoming his physical disability to become an example to the rest of us on how to deal with life’s challenges. 

As a teenager, unable to see, Erik continued to ride his dirt bike off a ramp.  In high school, he wrestled competitively and took part in other sports such as long-distance biking, skiing, acrobatic skydiving, and marathon running.  After he graduated from college, Erik taught at an elementary school and began to rock climb and scale mountains.  Eventually, he reached the peak of the highest summits of all seven continents, including Mt. Everest.

            The 2006 award ceremony, held at The Henry Ford in Dearborn Michigan on May 20, 2006, was a full day affair.  The morning was a special event in which Erik met and spoke with visually impaired children.  Elizabeth Kazmierski entertained with a song that she had written for the event.  Supported by film footage, Erik spoke to his young audience about his life and the obstacles that he had overcome and answered questions that the children posed. 

At the same time, a scientific conference, sponsored by William Beaumont Hospital, was taking place at the Detroit Institute of Arts.

            The award ceremony took place in the evening and Erik was presented with the 2006 Children’s Vision Award.  In attendance were local celebrities Ernie Harwell and Lila Lazarus.  Music was provided by Michael Blaszkiewicz and David Cocagne of the Troubadours.  After dinner, the premier showing of the movie based on the book about his life, Touch the Top of The World, was viewed.  The movie was introduced by Erik, who gave a short history of the making of the movie, and was followed by a short question and answer period.

            This was an extraordinary event for ROPARD.  Erik Weihenmayer’s participation and acceptance of the Children’s Vision Award will bring awareness of ROPARD to a larger audience and public.

Spreading The Word About ROPARD and The Children’s Low Vision Resource Center  Paula Korelitz and Rosemary Blaszkiewicz, our goodwill ambassadors, continue to bring news of ROPARD and the Children’s Low Vision Resource Center to people around the country and throughout the world.  In February, Rosemary attended the Illinois Chapter of the Association for Education and Rehabilitation of the Blind and Visually Impaired and in March, Paula was in Anaheim for the California Transcribers and Educators of the Visually Handicapped Conference. 

            These conferences give Paula and Rosemary the opportunity to meet and share ideas with educators, parents, transcribers, doctors, and other professionals involved with the visually impaired.  From other non-profit and for-profit companies, they learn about new materials and resources that can be used at the Center.

At these conferences, Paula and Rosemary set up a booth where they provide information about ROPARD and The Center.  The helpful items that ROPARD provides for parents are displayed, including contrast blankets, mitts, and bibs that are made and donated by the Delta Gammas, a major sponsor.  In addition, our booklet, Looking Ahead, our videos, and “See the Light” bracelets are available for purchase. 

Rosemary and Paula also provide information to doctors, teachers, and other professionals from other countries, who wish to replicate the Children’s Low Vision Resource Center in their homelands.  ROPARD receives phone calls and emails requesting information and in recent months professionals from Poland, Puerto Rico, Italy and Taiwan have come to the Center to learn how they could provide this beneficial service to families in their own countries. 

Once again, ROPARD will be selling Holiday Cards this year.  Our card was designed three years ago by 12 year old Annabelle in Iowa.  The card is also available in Braille.  We are still looking for a new design, with a new artist, so please don’t hesitate to submit designs to ROPARD, PO Box 250425, Franklin MI 48025.  Please add a short biography of the artist and a photograph. 

In the meantime, cards may be ordered on-line at our website:  http://www.ropard.org or by mail.  The cost is $15 for a box of twelve or $26 for a box of Braille cards.  If inscription is desired, please order early.

 With each dollar contributed, new avenues of research into retinopathy of prematurity  and related pediatric retinal diseases are being investigated. Donations to ROPARD have funded the following: 

Photo ROP Internet Screening Program

Pediatric DNA Registry

Research on Congenital X-linked Retinoschisis

Stem Cell Research

ROPARD’s website:  www.ropard.org

Children’s Low Vision Resource Center

With the excitement about the arrival of Erik Weinhenmayer and the Children’s Vision Award Ceremony only a week away, fewer golfers were able to attend this year’s tournament.  However, about 30 golfers showed up.  In spite of the low numbers, it was a great group and quite possibly the most enjoyable round of golf ever played.  Next year we will be back on track and get the numbers back up.  Every year we are gaining more local support and raising more awareness, which is the intention of the outing.  Next year, a few special events are planned that will make it even more interesting and enjoyable!  -Ken Bushway

ROPARD’s website (www.ropard.org) was created in an effort to improve the information that could be provided to families, especially those that could not come to Michigan.  It contains a great deal of valuable information for any family with a child who is visually impaired, with links to other resources on the web, a bibliography of pertinent books, and a list of developmentally appropriate toys.

The recently updated site provides several advantages.  The site is now easier to navigate for blind users utilizing screen readers.  It is also easier to use for people who are visually impaired due to the ability to change font size from small to medium to large.  A new search option allows users to find specific topics within the site.  The “cart” function means that anyone purchasing an item from our site can register once and easily log on for any future purchases.  The cart will retain name, billing, and shipping addresses, but not credit card information (a security feature).  Onsite translation service means that non-English-speaking people can read a webpage in one of eight languages with a single click of their mouse.

In addition to the information available for parents, the website has a section devoted to educating physicians on retinopathy of prematurity.