It was enlightening to have the opportunity to spend my week with the following delegates of Ohio. We had an amazing experience together...as we shared our passion for advocacy.

 

Richard and June Russell
Seven Hills, Ohio

Richard’s Story: I am the caregiver for my wife June, who was diagnosed with AMD in 1990 and her first eye went wet in 2000. I am semi-retired, which for our circumstances makes it easier for me to adjust my time to help her live a more normal life. Prior to June getting AMD, we both had our own careers and each day we would go our separate ways. That all changed once she developed the disease. I never saw myself as a caregiver. I always thought a caregiver was a trained professional. As a married couple I was merely adjusting to her handicap.

My biggest challenge as a caregiver was learning to be patient. My career was highly competitive and waiting and patience did not fit in. However, in time, as June learned to revise her way of doing everyday chores, I also learned to be more helpful. I also realized that other caregivers must face greater challenges than I, such as those who have to work around their full-time jobs and employers who are asked to give time off to possibly key employees to take a family member, who can no longer drive, to their eye appointment.

Like all medical problems, early detection does make a difference and the medical profession is doing a great job in this area. Both June and I are examples of this. What the public needs to be made aware of I how our elected officials in D.C. have failed to provide funding for specific medical research, such as AMD, unless it suits their needs. The private sector is continually being bombarded for requests to fund projects of all types and they cannot do it by themselves. AMD is no longer a disease that effects only our older generation. I personally have met younger people who are also having to deal with the problem.

June’s Story: In 1990 I was diagnosed with macular degeneration. In 200, my left eye became wet and in 2004 my right eye became wet as well.

I have been legally blind from age related macular degeneration for four years. I had no idea of the seriousness of my problem until my left eye became wet and I lost significant vision. I had Photo Dynamic Therapy at the Cleveland Clinic to stabilize my eye. Three years later my right eye became wet and there was not help for me at that time. The emotional impact was tremendous. I could no longer drive or live a normal life. With the help of my family, my doctor and the Cleveland Sight Center, I slowly regained my confidence and realized this is the way it is going to be the rest of my life.

I had to get used to the fact that I could no longer read or write without bright light and a magnifier. Moving about, especially in strange places was difficult without good light. I cannot recognize people more than a few feet from me. I have had to give up sewing and crafts and my love of gardening challenges me all the time. Since AMD I have learned to face new problems every day.

Even though I had PDT, Macugen, and Lucentis to help stabilize my vision, this is only the beginning. There is no help for me anymore to get my vision back but there are thousands of people who will get AMD in the coming years. Research is the key to help these people to avoid getting this disease. Congress must be made aware and realize the seriousness of AMD and increase funding for research to find a cure.

Laura and Kylie Glass
Alliance, Ohio
I have three children: ages 7, 5, and 3. Two of them were born with congenital cataracts, but all three wear glasses. My oldest daughter has had one cataract removed and eye muscle surgery along with countless hours of patching. She awaits her second cataract surgery. For the first two years of my daughter’s life, I repeatedly told the pediatrician that I thought something was wrong with her eyes. He kept telling me “squinting” was a habit and she would grow out of it. Because this was my first child, I “trusted” the pediatrician. When my second daughter was born, I took the opportunity to change doctors. On the very first visit she diagnosed my daughter with congenital cataracts. Within a few days we saw an ophthalmologist. Within a few weeks she had her left cataract removed. It has taken years to correct what could have been corrected in the first two years of her life. My second daughter has astigmatism and wears glasses. My son, who is three, had both cataracts removed earlier this year and then developed “second cataracts” and spent his summer with a retina specialist having surgery on both eyes again trying to fix them. So, I am caring for three children with chronic eye conditions with a long way to go.
Challenges are both financial and emotional. Financially, countless surgeries and keeping three children in glasses is a financial challenge. The Glass family received financial assistance for two of their three children from the BCMH (Bureau for Children with Medical Handicap and chronic illness). Cataracts fit into the bureau’s criteria for assistance.

Emotionally, the family is worried about safety and wellness for three children with vision problems. Their son, the youngest of three children, is very active and the biggest concern.

Lauren Abel
Member of Prevent Blindness Ohio’s Southwest Ohio Chapter Executive Council
Development Chair
I have been very blessed to have good vision, something I inherited from my parents. Part of the reason we have good vision is that I was taught at a young age that your eyesight is one of the greatest gifts you have and you should take good care of it so that it will take good care of you! Because of this, my parents made sure that I got regular eye exams as a child. They did the same. It was a family event. We all got our eyes checked together.

As an adult, that important lesson has stayed with me. And it has with my parents too. I am 43 years old. I have 20/15 vision and have never needed any type of vision correction eyewear. My parents didn't need reading glasses until they were in their late 40's or early 50's. My parents are now in their 70's and my grandmother is nearly 95! My parents wear glasses today and continue to get their eyes checked each year. My grandmother is the same way. Our family knows the importance of protecting the gift of sight. We take care of our eyes and know that by doing so, we are protecting our ability to see all the beautiful things this world has to offer. I cannot imagine my life without good eyesight. The small amount of time and money it takes each year to protect that gift is a small price to pay for the joy of sight.

Rick Bunner
Zanesville, Ohio
Prevent Blindness America Government Relations Chair
Rick has extensive experience at both the local and national levels with vision related issues. He began his career as a teacher of the visually impaired. Later, he went on to become a vision health consultant for the Ohio Department of Health where he developed vision screening standards, and created and managed a network of children’s vision clinics staffed jointly by optometrists and ophthalmologists. Rick has served as the Chair of the Prevent Blindness Ohio Board of Directors and as a member of the Board of Directors of Prevent Blindness America. Currently, Rick serves as Chair of the PBA Government Affairs Committee.

 

This week I attended the third annual "Eyes On Capitol Hill" campaign in Washington D.C. I hadn't been to the capitol since the sixth grade...and it was an experience of a lifetime. I somehow made it out of the Kent blizzard Tuesday morning and arrived at the Cleveland Airport...my flight was delayed for an hour...I found some time to catch up on the school work that I THOUGHT I was going to miss (KSU ended up cancelling school for the days I was gone due to weather conditions). I landed in the BWI airport and took the Super Shuttle into D.C. Our meetings and reservations for PBA took place at the Holiday Inn On the Hill. I checked in as soon as I arrived, registered with the PBA delegates, and quickly changed into professional dress for our first dinner.


I walked into the pre-dinner room and couldn't believe my eyes. I honestly wasn't prepared for what I was about to experience. Women and men of all ages stood around the room...with walking sticks...assistant dogs...mothers/fathers...and caregivers....all to help tell their stories of the importance of eye care in our nation. I couldn't help but feel for the children who were present...one in which was from Ohio and was born with two cataracts...she would have become blind if it weren't for an effective vision screen. All of my advocacy was finally paying off...I saw the truth in what I was doing...and realized how even more important it is not only to Ohio, but to the nation to increase funding and awareness of vision research, prevention, detection, and treatment.


After I was acquainted with the other Ohio delegates...I went up to my hotel room to prepare for Wednesday. We spent the day learning HOW to advocate our issues to the Members of Congress. Advocates, constituents, CEO's, and directors from Prevent Blindness America worked with Members of Congress, the administration, and other policy makers about the significant burden of vision loss, and the value of vision prevention and research. With my participation in Eyes on Capitol Hill, I enabled PBA to continue to build a strong support system for critical vision programs and legislation on Capitol Hill. More than 80 million Americans have a potentially blinding eye disease, 3 million have low vision, 1.1 million are legally blind, and an additional 200,000 are more severely visually impaired. More importantly (and the reason for us going to Capitol Hill)...HALF OF ALL BLINDNESS CAN BE PREVENTED!!!! If nothing is done, the number of blind and visually impaired individuals will double by 2030.


Wednesday morning we listened to Mark Richert (Director, Public Policy for the American Foundation for the Blind), Dr. Michael Duenas (Health Scientist/Project Officer-Centers for Disease Control and Prevention), and Dan Garrett (Senior VP-Prevent Blindness America) on how to improve the nation's vision health by building a coordinated public health approach as well as to learn what the PBA Congressional priorities were on our visit. We then had the privilege to listen to returning advocates personal stories and how their vision has affected their life. The senior director for science policy and public affairs of Pfizer Inc-Joesph Hammang-spoke to us on the importance of research and need for increased funds. Last but not least, we spent a lot of time learning and practicing specific exercises on how to get through to our nation’s leaders. At night, the Ohio crew met for dinner at the historical Union Station.


We were taught by advocacy guru, Stephanie Vance, to ask our Senators and Representatives for THREE things:

1. Funding for Vision Programs- Congress created the CDC Vision Screening and Education program in 2003 to address teh growing public health threat of preventable vision loss among older Americans. Currently, only ten states receive funding to screen and educate elderly, low-income, underserved populations, and follow up with appropriate referral and treatment efforts. Furthermore, PBA is seeking to develop a new partnership with the Maternal and Child Health Bureau to develop model programs to improve the screening, detection, and treatment of vision problems that would otherwise result in delayed learning and education in children. We asked Members of Congress to support these efforts by adding their name to the Congressional "Sign on" letter that will be circulated by the Congressional Vision Caucus. We also asked Senators to send a letter to appropriators in support of these programs. All delegates were able to speak on behalf of this issue and the need for increased funding.

2. The Vision Preservation Act (H.R. 3750)- Vision problems are a growing problem in the US-especially with the aging of the baby boom generation. Approximately 80 million Americans have a potentially blinding eye disease such as diabetic retinopathy, glaucoma, cataract, or age-related macular degeneration. This act increases public awareness about vision problems, bolsters research at the National Eye Institutes, and improves access to vision care at Federally Qualified Health Centers, the Maternal and Child Health Bureau, and expands access to rehabilitation for individuals with vision loss. This legislation was introduced in the House in October 2007, and has more than 20 bipartisan cosponsors. We are also working with Senator Christopher Dodd (D-CT) to introduce the legislation in the Senate, and are asking Senators to be an original co-sponsor of the Senate Bill.

3. The Congressional Vision Caucus (CVC)- Members of Congress who have a common interest or goal often join together to create "caucuses" that are dedicated to that particular issue or cause. Caucuses convene periodically to learn more about the needs and problems of a particular community, and to develop strategies and agendas to solve those problems.

The CVC was created three years ago to increase awareness about the growing burden of vision loss, and to build support for programs that prevent vision loss and save sight. The mission of the CVC is to inform Members of Congress about the causes of vision loss; the growing number of Americans at risk protect eyesight; the need for the growing number of Americans at risk protect eyesight; the need for appropriate treatment and rehabilitation; and the need to direct adequate resources towards research, prevention and treatment of eye disease.

The Caucus started with only four members, but under PBA's leadership, has quickly grown to more than 100 bipartisan members. We asked for Members of Congress to join the CVC, to further build our base of support for vision issues. Ohio Members of the CVC: Pat Tiberi, Deborah Pryce, Mike Turner, Marcy Kaptur, Zach Space, Sherrod Brown (2nd member to join the CVC once membership was opened to the Senate)


I personally met with the Senators and Representatives from my district. As a group, we traveled to Senator George Voinovich's office and met with his aid-Angela Mikolajewski. We were prepared that often the Senators are unable to meet in person...but that it is just as important to meet with the staff who help to legislate our issues. Angela voiced that they would be interested in support all of our asks and that we would follow up with their office in those regards. We also met as a group with Senator Sherrod Brown's staff, David Mitchell. David also enjoyed our stories and strongly supported our asks.


Our group departed as we traveled to our reps offices. My meeting was pushed back to the late afternoon and I was to travel and meet with US Representative Tim Ryan's staff alone. Although I have been through several difficult pageant interviews, I was about to enter a real life example of that. I rushed across the beautiful capitol and walked for about 15-20 minutes in four inch heels (couldn't help myself!) I met with Ryan Keating-a young professional politician. I introduced myself and immediately started telling my story as a constituent and member of his district. I started to introduce my asks and presented him with the literature to leave behind. He asked several questions, many of which I didn't know, and I confidently told him that I would be following up...in the back of my mind thinking I had failed....

Somehow I began to build rapport with him about KSU and found that his sister was a freshman. I told him that I was an academic advisor and gave him my card if she ever needed assistance. After that, he mentioned that the office already supports eye care and knows of the importance and would most definitely fulfill my requests....overall, a great success!!!


I left the Longworth Building and awaited my shuttle back to the airport from the hotel. Unfortunately, there were handfuls of accidents during rush hour in D.C. (as if it weren't bad enough) and my shuttle was TWO hours late picking me up. Not only was the shuttle service late....I was pretty sure that I was going to die on the journey...it was like being in an action movie when you knew that something bad was going to happen.....he still had two other passengers to pick up....would speed and then cut lanes....almost ran over a few people...ran through red lights...and would slam on the brakes every two seconds. I arrived at the BWI airport TEN minutes before my plane took off....thinking that I should just reschedule my flight...however, there wasn't another flight into Cleveland until 10am the next morning (meaning I would have to stay another night and pay for a hotel and...well, you get the picture of stress I was going through!!!) The Southwest crew encouraged me to sprint to the gate...so I did...and I made it!!!! I actually amazed myself...it has been a long time since I'd run that fast =)


Overall...it was a lifetime experience and I am honored to have been a part of it. I hope to attend again next year...and will keep you updated on our progress with the bills and actions of our Senators and Reps.