O U R V I S I O N I S C L E A R
The newsletter for families and supporters of the Foundation for Retinal Research
FRR Visions
June 2009 http://www.tfrr.org/ • info@tffr.org • 1-224-927-5063 Sally Lewinski, editor
The First Egg
By Amber Purpura
What is a BFF? I am sure most of you have heard this acronym used around your house if you have children. It stands for ‘best friends forever.‘ For Nicki, my 9-year-old daughter, she is a little girl named Tess. All parents wish and hope for a special friend to come into their child’s life that makes them happy, someone they can trust, and someone that will always be there for them. I have prayed and wished for this to
happen for both my children, but I can not help hoping a little bit more for my child who is blind, because sometimes making friends is a little easier for the child that is sighted.
Nicki has always been around many friends and has many play dates. I always make sure they have something set up that they both can play. Most of the time it works out well. But if they are somewhere there are a lot of kids, she is sometimes not always included. Kids can sometimes be a little too worried about themselves and don’t always think about others and their feelings.
But this year Nicki was reacquainted with an old friend named Tess. Tess is a very special ten year old little girl. She loves to swim, ride her scooter, play with American
Girl dolls, has the best sense of humor and she has Epilepsy. Because of the Epilepsy, sometimes she takes some extra time to process and understand certain things.
Tess and Nicki are perfect friends for each other. Nicki is very patient and lets Tess formulate what she wants to say without rushing her. This in turn gives Tess more confidence to continue talking. And Tess pays attention to Nicki and answers her questions and truly cares about her. Throughout the year they have gotten closer and closer, calling each other on the phone, having sleepovers every weekend, having inside jokes that only they know about, and even getting in trouble inschool for day dreaming about each other.
This Easter when we were at an Easter Egg Hunt, all the kids were looking for hidden Easter eggs. One of the children was asked to guide Nicki so she could help her find her eggs. The little girl said, “Okay, as soon as I find all of mine first.” In the meantime, Tess grabbed Nicki’s hand and led her to all the eggs. On the first egg, Tess reached down and handed Nicki the egg so she could put it in her basket. Tess said, “Here Nicki, you can have the first egg.” Right then and there I knew Nicki was right, Tess was her BFF.
I wish each and everyone a BFF like Tess, she is truly an answer to all my prayers.
SKYLAR COVICH - A Life of Accomplishment
By Frank Covich
Skylar Covich is an amazing young man whom we recognize as a role model of
courage, accomplishment, kindness and humility for all students. Skylar was born blind, with Leber’s Congenital Amaurosis, and his determination to become a leader is a story of greatness.
As his father, I want to share with all our FRR friends Skylar’s accomplishments and
the steps he took along the way. You will understand our pride, and hopefully gain hope for your blind child.
The University of California Santa Barbara PHD program for advanced studies in
political science has just recruited Skylar. He will strive to become a professor, obtain
the highest educational credentials and serve as an advocate for those in need.
Skylar recognizes that many people have dedicated their time, energy and love to help him reach this goal. They include his parents, teachers, professors and his many friends. Having begun his early education at New York's Jewish Guild for the Blind (when only 6 months old) followed by a few summer courses in daily living skills, he has spent his entire student life attending main stream schools.
In first grade, Skylar began piano lessons and today is a classical pianist. He earned 27 gold medals in the New York State games. When he turned 9 we moved to California and Skylar instantly made friends and became student council President in 5th grade. Soon after, a local newspaper ran an article “Classmates Follow as Blind Student Leads”. In middle school, Skylar became one of the top 50 spellers in California.
In high school he played in the symphonic and band program and participated in many extra-curricular events throughout high school including being President of his freshman class and Captain of the Academic Challenge team.
Skylar began skiing in fifth grade and became the Captain of the Shasta County Blind Skiing Team, advancing to become a nationally ranked Para Olympic Blind skier. Graduating High School Skylar was honored to become the First Guild Scholar for the Jewish Guild for the Blind, and received other major scholarships.
Skylar held many leadership roles at Saint Mary’s College (SMC) which included being President of the democratic club. In off-campus politics he was an intern in the field office of his state senator, which led to his being Internet Administrator for the Dennis Kucinich Presidential Campaign in California. He also worked for Barak Obama in his Albany, NY field office. He is a member of the California Association of Blind Students where he serves on two committees.
Studying abroad in 2008 “Rome and the Vatican,” Skylar had audience with Pope Benedict 16th. He also met with Father Ted Hesburgh, President Emeritus of Notre Dame during a recruiting visit to Notre Dame for Masters and PhD Programs.
Graduating from Saint Mary’s College of California, majoring in political science and maintaining a 3.9 GPA Sklyar was nominated for class valedictorian receiving St Mary’s prestigious Haggerty Award as the top liberal arts student in his 2009 graduating class and won the Thomas Jefferson Award as the top political science graduate.
In addition to his preparing for graduate life at UCSB, Skylar is currently applying to become a Tenbrook fellow for the National Federation of the Blind, NFB.
These are just a few statements about the man named Skylar Covich. We hope parents of students who are blind can be inspired by Skylar’s life story, a testament to the fact that nothing will stop anyone who strives for it.
Betsy’s Corner
Betsy Brint is co-founder of the FRR, and the lucky mom of Alan.
Alan’s life changed the day he got his cell phonewith screen reader technology. Really. The abilityto send and receive text messages made him part of the sixth grade world. The average American teen sends and/or receives more than 2,000 text messages per month. Giving Alan the ability to communicate with his peers in the same way they communicate with other kids keeps him in the game.
I recently read a study that said people tend to be friends with people who prefer the same modes of communication. Growing up, we would call friends on the phone to arrange a night out. Now, most of us middle-agers use e-mail to make plans.
And though we are stuck in the e-mail age, our kids have moved on to texting, Twittering or social networking. So if we want our children who have visual impairments to be part of the social scene with kids their age, they have to have access to the right form of communication.
The screen reader Alan uses is called Mobile Speak. It is made by Code Factory and available through AT&T. For information on Mobile Speak, go towww.codefactory.es. I also recommend calling AT&T’s special phone number for customers with
disabilities at 866-241-6568. Code Factory andAT&T have a licensing agreement for Mobile Speak that makes it available for $89.00 plus the cost of the phone and service. Find out which phones are able to support the software through AT&T. Alan has the Motorola MOTO Q 9h and it works very well with Mobile Speak. Technology is not cheap, but the payoff with this investment has been huge. Alan now has a group of friends who regularly call him, send him text messages and include him in their plans. Is this the panacea for all social ills? No, but it sure helped.
FUN-draisers really are about great times!
By David Brint, FRR President and Founder
I have had the pleasure of experiencing three fundraising events that have reinforced my belief in people and community. Fundraising comes in many forms. It includes grant writing to large foundations, major donor gifts, wills and bequests, corporate sponsorship, individual contributions and more. All are important components of any organization's fundraising. But when a community comes together to support a person or a cause, the world feels a little different.
In May I traveled to Portland, Oregon to join the Johansen family’s 5th Annual Walk-
a-thon. Then in June I participated (and I use that term loosely) in the Moncman family's Golf Outing in Pennsylvania. And throughout the entire month of February,
2009, many of us here have had the pleasure of working with Highland Park High School as they raised money and awareness for this year's charity of choice: FRR.
Different things struck me about each event. For the fifth-year, in support of their
6-year-old daughter Clara, who has LCA, Mark and Laura Johansen of Portland,
Oregon decided to sponsor a walk-a-thon through Portland's Tualatin Community
Park. Laura along with her three sisters(Clara's aunts) began orchestrating the event by forming a network of family, friends and neighbors.
The morning of the walk-a-thon, Laura and Mark arrived at the park at 6 A.M. where they were aghast to discover the remains of the prior evening’s festivities, a crawfish gala--that left the park littered with thousands of shells! Amazingly, when I arrived at
9 A.M. the park was spotless and the hundreds of silent auction items were displayed, having been arranged by a team ofvolunteers. The weather
was perfect and the walkwent off without a hitch.
Family and friends arrived and participated as if they wouldn’t have dreamed of being
anywhere else that morning.
I had the great pleasure of spending time with Laura’s Dad, Dr. Ralph F. Helzerman,
Jr., who has the rare ability of making you feel like a part of his family in just a few minutes. Everyone enjoyed the park, each others company and getting their names Brailled by Clara. At the end of the day it was clear that the almost 250 people who
participated were aware of what community means and how to support someone they love.
In June, Tim and Kim Moncman, parents of AJ, their 4-year-old with LCA, sponsored
the Moncman Golf Outing. When I arrived at the Southmore Golf Course in Bath,
Pennsylvania I found twenty strapping high school football players organizing the golf-
bag drop-off. Their presence bright and early on a Saturday morning shows their
respect and support for AJ's father Tim, the head football coach at Liberty High School where his Pennsylvania AAAA State Championship team has been to the state finals three of the last five years!
I soon learned this event had been sold out for months. Thirty-six foursomes were
packing the course and at least three sponsors had been secured for each hole. I
had the pleasure of golfing with Kim’s parents, Karen and Jim Broughal, who, I
have a feeling had a lot to do with thirty plus hole sponsors. The event was nothing short of the Liberty High School community's outpouring of love and affection for the entire Moncman family.
There were two things I saw at the event that amazed me: 1) Several large people
(football players) carrying long metal sticks (golf clubs). 2) A herd of teenage boys
seeking out and relating to a wonderful four-year-old. As Tim and I discussed, I think AJ teaches the teenagers as much about life as they are able to teach him. I had a truly spectacular day shared with a truly spectacular community.
Last but not least was the month we spent with the Highland Park High School (HPHS)
Charity Drive. Each year since 1998 the students at HPHS, under the guidance of staff that are nothing short of angelic, select a charity to support. The students conceive and hold over twenty fundraising events, they begin their work in the fall by reaching out tothe people and merchants throughout the community to donate time, money, goods
and services to support the month-long fundraiser. Hundreds of people from
Highland Park participate in one way or another and the students worked day and night for the entire month to execute the Drive. What struck me most about this effort
is that an entire school has learned to motivate an entire community for a cause. These kids will forever know that they can and have changed the world. Of all the
lessons we teach as parents or teachers what could be more important. I am just so glad that the FRR was the subject for 2009.
It has been quite a year so far. Undaunted by the economy, we all keep working for a
cause, strengthened by the support of our friends and community.
RAMONA’S KIDS: Griffin Miller a hit on the airwaves
By Romona Robinson, WKYC Channel 3
The saying, "when one door closes, anotheropens" is credited to inventor Alexander
Graham Bell. We were reminded of that saying when we met a six-year-old boy
from Medina this week.
Griffin Miller has a congenital eye condition, known as Leber Congenital Amaurosis(LCA). Doctors diagnosed Griffin when he was an infant. He can see shapes, and can detect the difference in some high contrast colors, but his vision is severely
impaired. As Griffin's family waslearning how to deal with hiscondition, they began to noticesomething quite remarkable about him.
"I think it started when he knew the alphabet very early. And he did the alphabet backwards when he was about 20 months old," Griffin's mother, Rachel Miller explains.
By the age of three, Griffin was learning addition and subtraction on a family computer that had programs for the visually impaired. Griffin heard the computer's voice mention multiplication and division. That captured the attention of the curious preschooler,
and according to his mom, Griffin was hooked.
During our visit, we gave Griffin several multiplication and division problems. To our
surprise, he did them with ease. Our photographer wondered if Griffin simply had a great memory. But the six-year-old squashed that theory when he worked out 44x 61. "Well, we all know that 60 would be 2,640 plus add 44 and that would be 2,684, I think is the answer," Griffin said aloud.
Decimals are no obstacle for him either, as we found when we asked him to divid eight by three. "That's a decimal. I can do decimals too! But sometimes the decimal keeps going on forever! 2.3333333," he said.
But Griffin really gets excited when talk turns to "Pi,"
It's a number that I just know. I know like 200 digits," Griffin said. In the interest of time, we asked Griffin to only recite the first 20 numbers, which he did with ease:
"3.1415926535897932384," Griffin says.
His talent isn't limited to math. Griffin is also an accomplished young piano player.
"Do you know that I have a talent show coming up in March?" he asked us. He will perform Minuet in G minor.
In many ways, he is just like the other five-and six-year-olds in Mrs. Nar's kindergarten classroom. He can be silly and funny. He likes his swimming and gymnastics classes. And he is a big brother to his little sister.
His mom's wish for Griffin is a wish shared by many parents of children with or without disabilities. It's the hope that their child will be "okay."
"Once he came to school, he's gotten more social and is making friends. And this other stuff with the math, as long as it's fun for him. But it makes me feel a little bit more secure that he's going to go to college, and he's going to be productive and he's going to get a job. And yes, that he'll be okay," Rachel Miller says. As the parent of a blind baby you've probably heard many doctors and well-wishers advise that you stimulate your child with music, but there has to be more to it than just plopping your baby down on the floor while they listen to Mozart on the stereo.
Highland Park High School Charity Drive 2009
By Sally Lewinski
Highland Park High School launched its annual Charity Drive on Tuesday, January
27, and ended at a closing ceremony on Tuesday, March 17, 2009. The Charity Drive
was a school-wide fundraiser where all the proceeds from events and contributions go
directly to the charity that was voted on by the entire student body. This year, the
student body and faculty announced that the FRR would be the beneficiary of their fundraising efforts.
Even though I cannot list them all, here are some memorable events that took place: Silent Auction and Bazaar, Battle of the Bands, Track (24-hour-run), Bowling Night, Family Dinner, Ice Skating Night and Michael’s Dance, just to mention a few.
As February sadly faded away, the Closing Ceremony for the Charity Drive was a festive culmination of the month long chain of events. In this day and age it is not easy to dazzle - but the Charity Drive's Closing Ceremony was dazzling. It incorporated the memories of the month including the commitment and dedication of HPHS's student leaders, student body, faculty and staff. The ceremony included a sense of humor coupled with a sense of purpose, music, technology and excitement that all captured the spirit of the Drive.
All residents of Highland Park, IL and the families of FRR can be proud of the Highland Park High School's 2009 Charity Drive which resulted in $165,000 (plus an
anonymous matching-gift bringing the grand total to$330,000) being raised. The energy and enthusiasm of the HPHS students and staff guided the Drive with vision and vigor coupled with careful preparation and dedication by all. Highland Park High School has set the bar high and should be an example for schools across the country.
The spectacular gift presented to the Foundation for Retinal Research was extremely meaningful to us. Raising this incredible amount of money in these economic times, or at any time, is a miracle. Our Foundation is small but our needs are great. This, coupled with the fact that we are in a race against the clock to make a difference for children with LCA makes it doubly special. We will immediately put these dollars to use to help find more LCA genes, to further research in gene therapy to restore vision and to help families affected by LCA to cope and network with other families.
It is wonderful to see a community of people who care and take action. We want to thank all of Highland Park High School, each and every person there. They have touched us with their selflessness and desire to help others. We want to thank all the students, especially the Charity Drive Co-Chairs Elizabeth Gore, Shana Sternberg and Rachel Weiss, the Student Senate and its President Matthew Berk for their dedication, leadership, hard work and organization. Kudos also goes to faculty and staff especially Mary and John Gorleski for their incredible ability to keep things on track, Ms. Deborah Dicker and Ms. Lesa Friedrich for their time and support, and of course HPHS Principal Mr. Brad Swanson for his enthusiasm and for jumping on board his very first year here. So we thank you Highland Park High School, you have set a high standard of community service not only for your students, but also for other high schoolsacross the country who may follow your example.
You have truly dazzled.
Gene Therapy: A Cure in Sight
Dr. Gerald Chader, Chairman of the FRR Scientific Advisory Board.
Each year in early May, the Association for Research in Vision & Ophthalmology (ARVO) holds its annual meeting with about 11,000 attendees and reports on the most
exciting developments in basic and clinical eye research. Much of this work is relevant to LCA and roughly falls into 5 general categories:
1) genetics and gene therapy;
2) pharmaceutical therapy;
3) antioxidants;
4) stem cell transplantation; and
5) retinalprosthetic devices. Following are some of the highlights.
1. Genetics and Gene Therapy: We now know the identity of 15 genes whose mutations lead to different forms of LCA. As you probably know, there are three ongoing clinical trials on gene replacement therapy for patients with the RPE65 mutation. The preliminary results from these trials are optimistic. Although yet in an early phase in each trial, safety, the most important issue, seems to be quite good. Also, some improvement in vision (“efficacy”) was reported. Dr. Jean Bennett, for example, mentioned that all patients in her trial recovered a measure of visual function. They also had an improvement in their nystagmus –an improvement not seen in the other trials. Future trials will focus on younger adults and children to maximize the potential for efficacy when the retinal damage is at an early and less severe stage. Clinical work on other forms of LCA is being planned. For example, a consortium of investigators has been established under FRR leadership to move towards gene therapy in LCA5. An
animal model lacking the LCA5(lebercillin) gene has been constructed using sophisticated molecular genetics technology and soon will be tested to see if gene replacement therapy will besuccessful in sight restoration. If so, a clinical trial would be in order – patients are already being screened in preparation. Other mutations under consideration for clinical trials are the AIPL1 and RPGRIP gene mutations. We are hopefull there trial will begin in 2010.
2. Pharmaceutical Therapy: The use of natural and synthetic agents that slow the retinal degenerative process has been well studied in animal models of retinal degeneration. These are called “neurotrophic agents”. A clinical trial using one of these agents, CNTF, is progressing well with good safety results. Basic scientists have identified many neurotrophic agents that could be used in clinical trials which,
individually or in combination, might effectively slow the retinal degenerative process and enhance vision. These are not yet in clinical trial but have been shown to be effective in extensive preclinical testing.
3. Antioxidant Therapy: The use of antioxidants to slow the degenerative process in cases of macular degeneration is now widely accepted. Preclinical studies in models of
Retinitis Pigmentosa (RP) also show the effectiveness of antioxidants in this family of diseases which includes LCA. A clinical trial on the use of antioxidants in RP patients is now in progress (two years) in Spain. The preliminary results as reported at the ARVO meeting are encouraging as to safety and efficacy. If finally successful, the use of antioxidant pills might be a safe and effective way to slow LCA, gaining years of functional vision.
4. Stem Cell Research: The use of stem cells has the potential of replacing degenerated photoreceptor cells in the retina and restoring vision. It was clear, though, at the ARVO meeting that this research is at an early stage of development. Although stem cell “therapy” is available in some countries, responsible researchers voiced their opinion that it is not yet ready for human use due to questions of both safety and efficacy. When finally ready though and fully tested, stem cell therapy could be one of themost effective ways to treat LCA.
5. Retinal Electronic Prostheses: In retinal degenerations like LCA, the photoreceptor cells die but other retinal cell layers remain alive. These cell layers can thus form a “platform” for the installation of an electronic device that functionally takes the place of the photoreceptor cells, passing a visual image down the optic nerve tothe brain. Several groups around the world reported on their prosthesis work at the ARVO meeting including progress in human testing. Two groups in particular, one in Germany and the other in the USA, have progressed to the point of actual sight restoration. In
an FDA-approved clinical trial in the USA, for example, not only was light perception restored to RP patients afteryears of total blindness but the ability to identify simple objects was regainedby the patients. Improved models of these devices are on the drawing boards such that it is hoped that ultimately, face recognition and reading ability can be restored.
Mary Rose Bushland’s birthday bash turns into a FRR fundraiser!
By Patty Bushland
When my husband, Dave, suggested wedo a fundraiser for Mary Rose’s birthday, I thought he was absolutely nuts. You see, Mary Rose’s 3rd birthday would be on December 21st, FOUR DAYS before Christmas!....Men?!
However, after much debate and discussion, I thought having a fundraiser might be an extra special way to celebrate. After all, what could be more wonderful than to share her big day with family and friends while giving her the gift of hope for her birthday.
We did have some rules. First, it had to be EASY. We have done walk-a-thons, golf outings, and garden parties in the past, but this fundraiser would be right in the middle of the hectic holiday season and we had less than a month to put something together. The next rule was that it had to be AFFORDABLE. Let’s face it, times are tough right now. It’s hard enough to ask people right around the holidays for donations, and
with the economy the way it is these days it can be even tougher. So we wanted people to be able to participate without breaking their budgets. Finally, it had to be FUN. This was a birthday party after all, and we needed a place where kids could be, well, KIDS!
We decided to hold a luncheon for families on a Saturday at our local Buca de Bepo’s Italian Restaurant. They were able to give us a private room. They were also willing to work with us to ensure that we could stay within our budget (we wanted to keep it at $25 per adult and $15 per child). Our menu was perfect for a 3 year-old birthday party. We kept it simple - soda, pizza, spaghetti with meatballs, salad, and cake. For those
who wanted some extra spirits, we had a cash bar. Next, we sent e-mails out to family and friends, both locally and far away. For those who could not attend, we let them know they could make a donation online at the FRR website. All we had to do after that was show up at the party! Seriously that is all it took to organize and plan this event!
We were so nervous that no one would attend. My husband kept saying we need to raise at least $500 to make this worthwhile, but we privately set our goal to raise $1,000. Needless to say we were pleasantly surprised. We had 50 people come to the lunch.
The feedback was great. Several of our friends commented that it was a nice chance to get away from shopping and other holiday preparation and have some birthday fun! Others said it was a nice way to reinforce what the holidays are all about… giving. Also, our non-local family and friends were able to show their support bydonating online. At the end of the day, we raised over $2,700 (versus a cost of less than $600).
Also, what made it special was that Mary Rose’s friends, Anja Swenson and Madeline Christensen, both of whom also have LCA, were able to come with their families. So not only did Mary Rose have a party, but she was able to share her gift of hope with them.
We were able to put this fundraiser together with minimal effort and not only did it raise money for LCA research, but also created awareness in our community. If we can do a FRR fundraiser during the hectic holiday season, while juggling our family of 5 kids, anyone can!
In closing, our family believes “Everyday holds the possibility of a MIRACLE.” We hope that by sharing this easy and fun fundraising idea, we can all be one step closer to a cure!
This newsletter is sponsored by the SPECIAL KIDS NETWORK
