Huge thanks to our friends, family and the St. Ignatius Varsity and JV lacrosse teams and their coaches for joining us on Sunday, April 29th for our first annual “Strike Out Coats” bowling event.
Chair Michele Pallari, board member Alexandra Morgan and team, Coralee McDermott, Dawn Hahn, Debi Spiers, Joann Cunnane, Linda Delahunty, Gerry Sangiacomo, Jill Stinn, Meagan McGovern and Mia Pallari created a fun event for all.

We welcomed a sell out crowd of more than 200 bowlers at Sea Bowl in Pacifica. Enthusiasm was in the air as raffle winners were drawn and silent auction bidders were called.
By the sounds of the laughter, high five-ing and general chaos, it seemed like JMCDF donors were having a great time all for a good cause, to save children’s sight.

Over $10,000 was raised to fund grants for researchers.

Stay tuned for our new doctor directory and a new fund for those young patients who may need help to seek medical attention.

Our hearts are full. We can’t thank each of you for stepping up with your generosity and love for Jack, Ashley Harper and patients around the world.
Your support is making the difference for so many.

Tina McGovern

The Jack McGovern Coats Disease Foundation (JMCDF) is hosting the 2nd Pediatric Retinal Vascular Disease Conference in San Francisco, February 10-11, 2012. It was an amazing success. Doctors flew in from all across the world…Brazil, Japan, and all across the United States. We sponsored a conference that discussed the developments, research, and new insights on some of the rarest pediatric retinal conditions, including Coats disease. The networking that ensued as a result we hope will facilitate new partnerships in the future. We learned about some amazing new research being conducted that we are looking into supporting going forward.

Please enjoy some of the photos from the event!

“It has been a long time since I have gone in depth about my eye and Coats Disease.  A lot of my friends don’t even know I have this disease.  I did not know what to expect at the Jack McGovern Coats Disease Foundation conference in San Francisco, CA.  What came out of it was amazing.

Being there and interacting with all the doctors who are doing research around the world was what I needed.  Dealing with the disease for so long, I want to help out the next generation of people who are diagnosed with Coats Disease.  It is something that I have dealt with for over 14 years and now it is time for a change.  It is time to find a cure, find a way to help children with this disease.

At the convention, that is what was being talked about.  It was wonderful to see doctors from around, the world all under one roof, talking about cases, explaining what procedures were done, hearing their thoughts on cures, prognosis’s, ideas, and also sharing stories about what they have seen work and not work.  The cocktail on Saturday evening really got me wanting to do more, after talking with the doctors on a one on one basis.  This is a disease that is not talked about, very few people know about it, and something that most people don’t even know exist.  With everyone working together, sharing stories, and idea, this disease is something that will have a cure.  It takes time and money, and raising money for research is what needs to be done.  I for one will be raising as much money so the next generation can live Coats Disease free.

I want to say thank you to the McGovern family who’s hard work and determination, has brought everyone together.  And a big thank you to all the doctors who came to the conference and their efforts to finding a cure and ways to stop Coats Disease.”

To join Chris in the fight against Coats and other childhood blindness diseases, send us an email at coatsdiseasefoundation.org or visit us on Facebook!

Question #1: What are some ways to detect Coats disease early? (Answer)
Question #2: What technologies are proving to be the most exciting for finding a cure for Coats disease? (Answer)
Question #3: What are the most effective treatment options? (Answer)
Question #4: Can gene therapy or stem cell therapy save Coats eyes? (Answer)

Program Director: J. Michael Jumper, MD

Phone: 415-972-4614
E-mail: lgeary@westcoastretina.com
Website: www.westcoastretina.com

I went through a period in my young adult years that I didn’t keep up with my appointments. However, I began seeing Dr. Pautler in my late 20s/early 30s. During those years, I developed strabismus, cataract, and eventually glaucoma in the same “bad” eye. He referred me to Dr. Guggino who removed the cataract and fixed the strabismus during one surgery. I am still without a lens in that eye, but obviously there was no need to replace it as I have no vision. Unfortunately, I still battle glaucoma. Fortunately, it is contained to the “bad” eye.

My paternal side of the family is filled with eye problems …some with complete blindness and others dealing with the threat/onset. That being said, I always chalked it up to “these dang family genes” and never gave Coats disease a second thought. Ironically my affected family members all live with the same threat, only we each received a different diagnosis (Coats, Wagner-Stickler, RP, MD, etc.).
I have always been able to do everything I want (except hang a straight picture). I am now 43 and have lived with this more than half my life and never worried too much until about eight months ago. I was sitting at my desk and noticed star bursts in my “good” eye. Being through my share of eye appointments, I knew this was something that needed immediate attention. I immediately went to Dr. Pautler and was told that my vitreous is detaching. Needless to say we have both agreed to leave it alone since with surgery we would be gambling with total vision loss. I still see star bursts and floaties (annoying), but Dr. Pautler gives me his undivided time and attention during each appointment and says, thankfully, there are no retina tears and the one small Coats vessel remains stable (not leaking).

Obviously my fear (but not my worst) is total blindness. My Aunt will most likely be blind in the next year or two and reminds me that some people deal with much worse. I completely agree. I can happily report that neither of my children (20 and 25), nor my sister’s or cousin’s children, show any signs of “these dang family genes”. I hope the trend continues ☺”

With my boyfriend Joey in St. Augustine (we love that place).

My daughter and I after competing in The Savage 5k Race (mud and obstacles).

Having fun at the 2012 Gasparilla Children’s Parade with my daughter and Grandson.

For more Coats Cases, visit our website or our Facebook page! To submit your own, send us an email.

Source: “Unite for Sight, Inc. – Global Eye Health Statistics”. Jan 4, 2012. http://www.uniteforsight.org/eye_stats.php

Meet Chris Barnes. Coats Disease patient. Athlete. Advocate. And our newest JMCDF Ambassador:

“My story starts at high school soccer practice when I was 15 years old.  We were working on heading drills into the goal and I was missing all the balls that would come to me.  It was really hard to see and I thought it was the sun’s glare but the sun was at my back.

I didn’t say anything about it to anyone, but the guys were starting to think something was wrong since I love headers into the goal and it was what I could do really well.  I went through practice and then my dad picked me up and I told him about the heading problem and he had me close my right eye and tell him what I saw out of the left eye.  This is where I got scared; I said I can’t see anything out of it.  He said stop messing with him, but the truth was that I could not see anything.

My parent’s family friend is an eye doctor so we called him when we got home and told him what was going on.  Since I really could not see anything, he told us to meet him at the office just to make sure things were not bad and needing emergency surgery.

He looked in my eyes and then he looked at great length in my left eye.  He said he wanted to get a specialist into the office to look at it the following morning.  I started to get scared when he told me that.  I have know Dr. Board for many years prior to that day so I felt like he was taking good care of me and wanted to make sure everything was okay. The following day a doctor from Duke University was there to see what was making my sight missing from my left eye.  He looked at my eyes and then talked to my parents regarding what he saw.  There were blood vessels that were leaking in my left eye and the blood was in front of the retina, that is what was causing the blindness in my left eye.His thought, surgery, right then and there.  My family and myself thought it was needed, if something was bleeding, we needed to stop it, right?  The first surgery was the worst.  I sat there with my eyes wide open and starred at a needle that was being put into my eye socket, just below the left eyeball so that the eye could be numb for the first of five laser surgeries that I would go through over the next year.  The surgery was quick, but not painless.  The doctor said that the blood leaking might be from all the soccer that I played growing up… I see now that he had no idea what was going on.  He put me on the sidelines for two weeks from all sports to see if it was from being hit by a ball or from running.Two weeks later, more blood, more questions, which lead my family and I to search for more doctors and more answers.  We found a doctor in Maryland, at John’s Hopkins Hospital who was one of the top eye doctors on the east coast.

After the first visit at John’s Hopkins, we had our questions answered, I had Coats Disease.  Fifteen years old and hearing the news that the blood was blocking my vision and it might be there forever is pretty heavy.  While I was there the first time, I had another surgery then every four months for a year I would go back for more surgery.  The bleeding stopped as more laser surgeries were happening.  I ended up with 5 laser surgeries, scars on my eye, vision loss, but it was not the end of my life.  I was 16 years old, I was able to drive, and I was still playing soccer, some things had to change on the field but soccer is what I wanted to do.

Fast forward to today, I am 29 years old, still have vision loss in my left eye but making something out of it.  I did not let Coats Disease end my sports obsessions.  I played college soccer for a year, I have been a sponsored surfer, I run marathons and ultramarathons, do triathlons and Ironman triathlons, I am a sponsored Gatorade athlete, I am a coach and I am a web designer.  But the one sport that I am most passionate about is guiding visually impaired or blind athletes in marathons or triathlons.  I got involved with an organization called C Different Foundation based out of Houston, Texas.  From there I have met people all over the United States and Canada who guide or need guiding.  This year I was privileged enough to give up my Boston Marathon qualifying time to guide a visually impaired runner named Robbie.

Looking back at the days when I thought things were going to be bad, I was blind in one eye, what was I going to do?  I won’t be able to do anything, I am blind.   What was I thinking?  Everyone has two eyes, one of my eyes got bad, and then the other eye, well the other eye got better and was 20/15 the last time I went to the eye doctor.  So, if you or your child has Coats Disease and you think that they will not be able to live a normal life due to the disease.  Think again, they can, it is up to them, and they can sit back and have a sympathy party or get out there and do what they want to.  I hardly tell people about my eye and what all I have been through.  It is something that I keep to me and don’t want people to look at me differently or think of me as only having eye sight in only one eye.  I hate being treated special so I keep the Coats Disease history to only close friends and family.

I hope that this helps you or your child to see that just because you have Coats Disease, at any stage, you can do what you want and not have anyone hold you back.  It is your life, do what you want and leave nothing left in the “I wish I could” column.”

“I was diagnosed with Coats disease when I was 11 years old. The yearly eye sight and hearing screening at school is who tipped my parents off that something was aloof with my vision. Personally I knew my vision wasn’t great in my left eye but I was so worried about having to wear glasses that I didn’t tell anyone.

Thinking all I needed were glasses my mom setup an appointment with an optometrists. I did the vision test and failed miserably with my left eye. The optometrist immediately started to run tests to figure out why my vision was so terrible, I couldn’t even read the largest single letter on the screen. (technically my eyesight is 20/2100 or legally blind) I was ultimately referred to an Eye doctor specialist at the University of Minnesota (Dr. Knoblauch) but not before the optometrist told my mom it might be a brain tumor. Needless to say I was in the ophthalmologist office ASAP.

After taking one look at my dilated eye Dr. Knoblauch was able to quickly let me and my parents know exactly what was wrong. He also laid out the plan of action including the prognosis, which unfortunately included the fact I’d never regain my lost vision. I had 1 eye surgery and 3 laser treatments to stop the spread of the disease. This was all completed before my 12 birthday. I guarantee my whole diagnosis and treatment was harder on my parents than it ever was on me and I felt bad putting them through all of this.

Fast forward 21 years and I still have a yearly thorough examination but thankfully the disease hasn’t spread. I learned to cope with the lost vision at such a young age that I hardly even notice it today. I do wear eye protection when doing just about anything potentially dangerous, which means I was the basketball playing dork with the goggles but the fear of losing sight in my “good” eye was and is enough incentive for me to do whatever it takes to ensure I keep my good eye healthy.

I’m now happily married and in good overall health and other than the fact I can’t hit a curveball I’ve been able to fill a full and very happy life. I’ll never let losing my vision in one eye stop me from being the person I want to be and doing the things I want to do.  Through the Coats foundation I hope to help other families that are struggling with this terrible disease even if it’s just as a role model to let them know you can and will live a happy life even if you don’t have perfect eyesight.”