Aniridia Foundation International going to Seattle, Washington to attend ARVO
Aniridia Foundation International (AFI) will again be attending the Association for Research in Vision and Ophthalmology (ARV0) conference in Seattle, WA. This conference has many important presentations and the ability to reach researchers and physicians who are doing research projects. AFI relies on their active members who volunteer their time to come and help build the 10 x 10 booth, create that year's promotional graphics, help distribute information each day, and assist the AFI Director with other tasks.
Each year, AFI partners with fellow vision nonprofit Fight for Sight to fund research in an area related to aniridia syndrome. Applications for these grants are determined at the ARVO meeting.
This year, AFI will meet with the families in that area of the country during the week of May 2-9th. If you want to be included in this event or if you would like to take this opportunity to learn about AFI and become an active member, please contact us before May 1st.
Aniridia Foundation International Partners with Fight for Sight in Research
Aniridia Foundation International (AFI) headquartered in the UVA Department of Ophthalmology attends ARVO (Association of Research in Vision and Ophthalmology) each year. This past May, AFI signed an ongoing partnership agreement for research projects with fellow non-profit organization Fight for Sight. Research funding will be for the PAX 6 gene and conditions which relate to aniridia, especially those that are also commonly found in the general population and listed below. Aniridia Foundation International and Fight for Sight will co-fund a Summer Student Fellowship grant and consider other larger research funding opportunities on an individual basis. The current summer student grant has been awarded to Andrew Seffensmeier of the University of Dayton. His project title is “Understanding the genetic basis of aniridia, a birth defect in the eye”.
Aniridia syndrome is a catch all name for children and adults born with the genetic disorder rendering them to live with multiple eye and medical conditions in various combinations. These conditions include glaucoma, corneal scarring, cataracts, retinal issues, low vision, nystagmus, autism spectrum disorders, diabetes, and weight issues. While these conditions are common in the general population, multiple conditions such as these are not usually found in one person as in aniridia syndrome. For more information, please contact the AFI office at 434-243-3357.
Latest Eye on Aniridia Newsletter - Did you get yours?
AFI recently has been informed through speaking with several members inquiring about the conference that they did not receive newsletters sent via the postal service as Free Matter for the Visually impaired and Blind. The specific newsletter in question was our Summer 2012 issue.
We have been informed that this way of sending newsletters is not delivered as First Class but is delivered in the manner as each specific post office decides, if it makes it to the recipient at all. Before we make any decisions in regards to begin charging to send the newsletter via the postal service as regular first class mail rather than Free Matter for the Visually Impaired and Blind, we would like to know how many people were affected. Please let us know if you did not receive it, your local post office (to see if the problem is occurring in certain areas) and we will send it to you in a PDF via email. Basic conference details were in this issue.
Have you renewed your membership for 2013?
As of Jan 1, 2013, Aniridia Foundation International's policies on membership have changed. In efforts to hold down costs and continue to provide members benefits without charging to join or monthly dues, we have decided members must renew their active status each year. This insures those that are registered are interested in being active, contact information is kept updated and holds down on mailing costs. If you HAVE NOT filled out the 2013 membership form, please click here to submit yours to be an active member for one year and have access to member benefits such as the conference, newsletters, and more.
Facebook page for Teens and College age members
AFI will be creating a separate Facebook page (private for security and by invitation only) for teens and college age people with aniridia for socializing and getting to know each other before the conference. Events such as: Bowling party, movie and pizza night, board game night, lunch on the Corner or on the historic downtown walking mall, Fridays after 5 free music event, tour of the historical UVA Rotunda and lawn and more will be discussed and planned by our young adult committee.
We have seen over the years that it really makes a difference to have peer support, and our conference activities for them have been highly ranked as the best part of the conference according to them.
If you would like to get your children in these age groups to meet before the conference and socialize online with their peers who know what having aniridia syndrome is like, please contact us so we may add them to the Facebook page.
AFI Attends 2013 ARVO
Aniridia Foundation International (AFI) attends the Association of Research in Vision and Ophthalmology meeting (ARVO) each May. This year it took place in Seattle, Washington. For years, it was always in Fort Lauderdale, Florida; however, they have decided to move it around the country each year. This was especially nice since we were able to meet with our AFI members from the Washington area.
Each year we assemble a team of active AFI members to assist us with booth set up and exhibiting to the many international clinical research physicians and scientific researchers. Our 10 x 10 booth (shown here) comes in about 200¬+ pieces that we must build. Special thanks to active member Matt and his fellow firefighter and friend, Sebastian, who helped build, decorate, assemble the lighting and audio visual presentation equipment, and the final breakdown. We could not have done it so well without you! Also, we would like to thank active members Heidi, Bev, Matt, and Heather for helping us at the booth during the ARVO conference. The physicians and researchers have always commented on how well we (AFI) present at these meetings.
Since research is one of our main missions, AFI co-funds a research grant with fellow nonprofit organization, Fight for Sight, for research in aniridia syndrome and the conditions which make up this disorder. At ARVO, we attended the Fight for Sight presentation and cocktail in honor of Dr. David Epstein, Department of Ophthalmology Chair at Duke University who was presented this year's Mildred Weisenfeld "Excellence in Ophthalmology" award. We again were announced as one of their partners for research for which AFI Director, Jill Nerby, presented the AFI check to Board Chairman, Norman Kleiman, Ph.D. and Fight for Sight Director, Arthur Makar.
Many exciting presentations and posters were part of this year's ARVO meeting. Also, we were thrilled to meet many of the top researchers and physicians at our booth who wanted to get involved with AFI or interested in attending the AFI conference this summer.
One evening during the conference, our AFI volunteers met with many of the AFI aniridia families for dinner and to discuss a northwest social gathering and fundraiser for the future. All families signed up and chose Aniridia Foundation International as their GoodDining benefactor. So while we were eating at the Edgewood Grill (a participating GoodDining restaurant) and having fun, we were earning AFI donations without spending more than we would have anyway eating out. It is that easy! Overall, this year’s ARVO was a great success and we look forward to attending next year. If you are interested in helping at our booth please E-mail me at [email protected] with a subject line Booth Volunteer.
University of Virginia Department of Ophthalmology and Aniridia Foundation International Giving Sight
The creation of an exciting new partnership at the University of Virginia offers quality ophthalmological care and the opportunity for cutting-edge research that will offer hope to those who are born or have become visually impaired or blind. The Aniridia Foundation International’s research program and UVA Ophthalmology’s gene bank will be integrated into the emerging Congenital Eye Disorder program. Combining this valuable data of the successful nonprofit with the knowledge and expertise of those in the medical and research field will bring positive international attention to UVA for research, education and exceptional patient care, especially in regards to congenital eye disorders.
The seeds of this partnership were planted fifty-one years ago when a Wisconsin infant, Jill Nerby, was born with glaucoma as part of a congenital genetic eye and medical disorder. Being the first born on both sides of the family, her parents and other family members were stunned when they were told the news that their child would most likely be blind by the age of thirteen. Furthermore, they were encouraged to place her in a blind education institution, advice which they thankfully discounted. Instead they decided to give their little girl hope and to instill in her the driving spirit that she would need to overcome whatever came her way.
At that time, little was known about the birth defect, there was no research to offer hope, and treatment was carried out with a “best guess” approach. In fact, the actual naming of this genetic disorder, aniridia, which means “lack of iris”, from what we know today, is actually the least important aspect of this genetic disorder. The most damaging conditions which make up this disorder and also found in the general population, are the loss of vision and health from glaucoma, cataracts, corneal disease, retinal problems, low vision/blindness, childhood kidney cancer, depression, diabetes, obesity and autism spectrum disorders in various combinations.
As Jill grew up, it became obvious that this little girl, faced with poor vision, the stigma that comes with disability misconceptions, plus multiple surgeries to retain her limited sight, was blessed with a passion to make life better for those who shared her struggles. After college, and armed with her medical/scientific mind, she decided that if her vision kept her from going to medical school, she would find another way to use these gifts. And so in 2001, while coping with her limited vision and rearing a visually impaired child alone, Jill Nerby created Aniridia Foundation International. This organization is a unique 501(c) 3 nonprofit with its own research medical registry program, well respected medical and scientific board advisors, a worldwide network of researchers, and an incredible outreach program that brings together families from all over the world.
In mid 2011, Jill was invited to move her nonprofit to the University of Virginia, where in addition to her position as Director of AFI, she serves as Manager of the Congenital Eye Disorder program in the school’s Department of Ophthalmology. With this new focus, the Aniridia Foundation International’s research program, The International Medical Registry, will partner with the University’s gene bank. The knowledge gleaned from this kind of collaboration can mean the retention of sight, and a better life, not only for those in Virginia, but for patients all over the world.
For more information, to schedule a presentation, or to make a philanthropic gift, please contact Jill Nerby at 434-243-3357. We appreciate your support and need your help to continue this worthwhile program.
Aniridia Foundation International and University of Virginia host the 2013 Make a Miracle conference to help people living with aniridia syndrome.
The Make a Miracle conference brings together patients, physicians and researchers to spread awareness about aniridia. Read about how our conference is helping make a miracle for people living with aniridia syndrome in an article in UVA Today.
Aniridia Foundation International makes news in "HealthDay" online magazine.
Learn about how Aniridia Foundation International is spreading awareness and helping to advance research for aniridia syndrome. Read the article, "Rare Eye Disease Leaves People Without an Iris: Aniridia, a genetic disorder, can cause blindness as well as metabolic illnesses, experts say," in HealthDay, part of U.S. News and World Report online.
Aniridia Foundation International announces the "DO GOOD Challenge"
Prizes for top 5 supporters raising the most by December 31, 2013
The holiday season begins our DO GOOD challenge to show the world that we can accomplish a lot by joining together to participate in the GOOD programs. This will raise awareness about aniridia syndrome and give you FREE ways to raise funds through everyday things you normally do anyway like eat, shop, search the internet and more. Businesses donate on your behalf as you shop, dine or search the internet with them. We will be updating our totals between now and Dec 31st to see how much impact working together proves to be. You can track your earned donations by registering first at www.goodsearch.com and designating Aniridia Foundation International as your cause. There are several GOOD programs found at www.goodsearch.com, however, the ones most used and have highest percentage donations are: GoodSwipe (shop or dine at top nationwide places), GoodShop (shop online, get great coupons), GoodDining (dine in or order out locally) and GoodSearch (search the internet). DO GOOD for those with visual impairments and aniridia syndrome.
Tell your friends and family to participate too. If they provide us your name, their earned donations go towards your total in your honor. (If you are participating, have them contact us via our website contact page, and state "I, (name) will participate in the Do Good challenge for Aniridia Foundation International and designate my earnings to go towards this family / individual's total. Name of family or individual.)
Use these instructions and easy templates for easy access to DailyGood.com on your computer, and to spread the word to family and friends about how they can also support AFI. Or download this fillable pdf letter template to send family and friends via mail or email to share with them in detail how they can DO GOOD for aniridia syndrome.
Social Media Spreads False Cure for Aniridia
Recently a few things have made me look at social media differently. It has made me think about the down falls of social media and if it's really worth it. Social media has drama, fighting, rumors, hackers, lies, trolls, and misleading information. All of which makes me wonder where do we draw the line? Does social media have more pros or cons? Over the years of using Facebook I have accumulated over 100 friends. I would say 85-90% of my friends are aniridia families. I do like connecting with others who are affected because I want to help them. Growing up I never thought I would be connected to so many people affected by aniridia, since I always thought I was rare and there weren't many others like me. Then I found Aniridia Foundation International (AFI). In 2004 I began volunteering by editing AFI's Eye On Aniridia newsletter. Not long after I began volunteering did I begin work on our book Aniridia and WAGR Syndrome: A Guide for Patients and Families. All of this was before Facebook, Twitter, Vine, and other social media. So how did I communicate and get stories from others affected by aniridia? I met them at AFI conferences and posted on AFI's private members' area. Before Facebook we all connected and asked questions there. We felt safe and there was ever rarely a fight or drama unlike what I have seen on social media.
Why am I rehashing the past? Because the past was better. We connected even without social media. People did not commit suicide because of being bullied on the internet. We talked to each other. We posted in our private area and asked questions. We became friends...real friends not someone we see on our timelines. Over the years we've become disconnected because of all the technology and social media. Have you seen the video called Look Up by Gary Turk? Well you should. He wrote, directed, and performs in it. What is it about? It's about being oblivious to our lives and those around us because of technology, especially social media. In it he says, "I took a step back and opened my eyes. I looked around and realized this media we call social is anything but. When we open our computers it's our doors we shut. All this technology we have is just an illusion." He then eloquently tells a story about how a man and woman met, fell in love, had a family, and a long happy life together. He goes on to say none of it really happened because the man was looking down at his phone and let the opportunity of meeting the love of his life slip by him. "When you're too busy looking down you don't see the chances you miss. Don't waste your time getting caught in the net. When the end comes there's nothing worse than regret. Look up from your phone. Shut down that display. Stop watching this video and live life the real way." Even though we have social media we're disconnected from our lives and loved ones. When is the last time you had a real face to face conversation with a true friend who you've know for a long time? For me it has been a while because my friends live far from me. So in a way social media has been a blessing. It reconnected me with friends I had not seen in years. Yet over the years since I joined Facebook I have seen lots of drama and people bullied. I've come to dislike it in some ways, because the more friends you have on social media sites the more drama and fighting occurs. I dislike having to "unfriend" people because I do not want to offend or hurt anyone. Yet the more drama and lies I see on Facebook the more I dislike it and more people I unfriend. I know what you're thinking. "I've met so many other families affected by aniridia on Facebook and it's so nice and convenient to connect with them and ask questions. Yes so have I, but there are better and safer ways to communicate with each other.
It does connect me with other families affected by aniridia, but our aniridia family is not an exception to the drama on social media. There have been lies and drama from aniridia families. I unfortunately had to "unfriend" a lot of people in our aniridia community because I could not take all the lies and drama any longer. I'm an adult and I refuse to engage with anyone who is fake and immature. Each time I clicked on the button to "unfriend" a person I cried. I hated that lies and misunderstandings had caused me and others pain. I felt betrayed by some of the people I sincerely thought were my friends, but they were only using me to get information on someone else. We all need to take a step back and realize even though social media connects us it also enables bullies and hackers to take over our lives. Why do we want any of that?
And why do we feel it is appropriate for our kids to grow up with this social media that is not truly all that it's cracked up to be? Wouldn't it be better to have a private and close knit group of people to connect with than hundreds of strangers? People have begun to feel their actions do not have consequences. They start fights, they bully, and degrade others just because they can. Why have hundreds of friends on social media when 99% will not be there for you when you truly need them? Why post your problems (or as on social media people say your "dirty laundry") for everyone to read? People do not consider or even think about what they put on the internet is there FOREVER even if you delete it from Facebook it's still there in cyber space. Do you really want your children to see posts you made about your ex husband or wife? Do you really need to take a picture of yourself every day and post it? We know what you look like you don't have to remind us every day. Do you really need to tell people you're to going to a party? Sorry to break it to you but we don't care...really we don't. Everyone should consider limiting what is put on social media. We as a society need to look up and connect with those around us more. Not only is the internet and social media disconnecting us, but it is also disillusioning us. How does it do this? By providing us with hyped up, misleading, or incorrect information. For an example, a university is doing research that will help people with a rare condition called aniridia. The university writes a press release about their research which helps corneal scaring in aniridia patients. Then a non-related organization takes this press release about the research, and it is rewritten by an uneducated and unknowing person who totally distorts the facts giving false hope. It does this by stating that the research is a cure for aniridia when in fact it is not. The organization posts this inaccurate press release on social media sites like Facebook. The press release spreads like wild fire and gives people false hope. After leaning the article had incorrect and misleading information a teenage with aniridia posted on Facebook stating, “I don’t know if it is even worth it to hope anymore. Just when I see a glimpse of it, it always seems to slip through my fingers." This shows that we not only need to guard our personal information on social media, but also our hearts. How can you get away from the social media but still connect with other aniridia families and get correct information on all the latest research? It is simple AFI provides you a safe place to connect with your aniridia community, but it is more private and friendlier. Unlike on Facebook where hundreds of people you don't know can see your posts and pictures. Wouldn't you rather connect with your aniridia family in a more private place to ask questions and share your child's success and struggles? If more people used AFI's private area we could begin to do more like having a chat with each other every week or Q&A with a doctor each month. Wouldn't that be cool and helpful? If you are interested in connecting in this manner please visit our private area today. If you have questions on how to log in or use AFI's private area please go to www.make-a-miracle.org and click on Contact Us.
Let's join together and not only help each other, but make a difference for future generations.
AFI Conference Highlighted in the UVa Alumni Fall Newsletter
The article describes how AFI not only supports people living with aniridia through research and sharing the latest medical advancements, but by supporting families in their daily lives. View PDF of article
On Facebook you can tag people in your posts to challenge them to take a (No) #IrisSelfie too.
You might also customize your post by explaining that your (friend/relative’s) has aniridia syndrome.
On twitter you could tweet something like: My (No) #IrisSelfie & $10 to @AFIMakeAMiracle to help #BlackEyedPeeps with #RareDisease aniridia syndrome. Follow suit!
You can quickly give to Aniridia Foundation International at our donation page.
Thank you to the UK Aniridia Network for including us in this wonderful campaign.
Take a (No) #IrisSelfie to raise awareness and funds
for aniridia syndrome
We want to raise both awareness of aniridia syndrome, and funds for the organizations supporting people who have aniridia syndrome and research treatments for it. We are doing this now as part of Rare Disease Day on February 28, 2015. It’s an initiative to bring together people affected by rare medical conditions like aniridia syndrome. So we ask you to post a photo of your eye, with or without an iris on Twitter, Facebook, and/or Instagram. People who cannot see well and children may need help taking the picture.
Jill Nerby Appointed to Virginia State Rehabilitation Council
Congratulations to Jill Nerby who has just been sworn in and appointed by Virginia Governor Terry McAuliffe to be part of his administration by serving a three year term on the State Rehabilitation Council. Jill is the Congenital Eye Disorder Program manager in the Department of Ophthalmology at the University of Virginia. She also is founder and Director of Aniridia Foundation International.
The Virginia State Rehabilitation Council (SRC) is a group of individuals who are nominated by a committee, selected and appointed by the Governor to work on behalf of people with disabilities by serving as a source of advice, information, and support for the Commonwealth's Department for Aging and Rehabilitative Services vocational rehabilitation and supported employment programs.
AFI Attends ARVO 2015
Aniridia Foundation International attended the 2015 Association of Research in Vision and Ophthalmology (ARVO) in Denver, Colorado. We are thrilled that Yichen in the lab of Melinda Duncan, PhD was granted a major platform presentation discussing Aniridia Fibrosis Syndrome (AFS) and the work that the Aniridia Foundation International research grant is funding.
Another exciting event at ARVO was that it was announced that PTC Therapeutics would be doing a Phase 2 Proof of Concept clinical trial of the drug Ataluren (also known in Europe as Translarna). In the mouse model, it was shown to help "read through" the stop codon found in nonsense mutations. About 30-40% of children and adults have aniridia syndrome due to nonsense mutations and they could potentially qualify for this clinical trial to start before the end of the year. Watch our website for more information to come.
The AFI Medical Registry collects data including genetic data to help researchers and clinicians learn more about aniridia syndrome and make advancements faster. All data given to researchers or clinicians WILL BE de-identified with a code. Regardless of what type of mutation you or your child have, if you would like to participate and have a file in the AFI Medical Registry, please send us your documented genetic test results to the address below. If you have not gotten genetic testing of the PAX6 gene sequencing yet, contact us so that we may help you get this important information as it will be essential going forward for therapies while we work towards the cure.
Benefits of being in the Medical Registry:
- keeping important data in one place
- we go to the Medical Registry first when seeking participants for clinical trials or research studies (some are compensated studies)
- you will be helping the "team" in learning more about aniridia, finding better treatments and working towards a cure for those with aniridia syndrome
United and Working Together....We CAN Make a Difference!