Page 1
Page 2
Page 3
Page 4
Page 5
Page 6
Page 7
Page 8
Page 9
Page 10
Page 11
Page 12
Page 13
Page 14
Page 15
Page 16
Page 17
Page 18
Page 19
Page 20
Page 21
Page 22
Page 23
Page 24
2 From Our Co-Founder 3 From Our Executive Director 4 From an MVRF Researcher 5 Sudoku 6 In Memoriam 7 SupportSightSM Program 8 Believing Is Seeing 2020 Campaign 10 Our 2014 Donors 15 Choosing the Right Sunglasses 16 We Will 18 What is Charles Bonnet Syndrome 20 Our 2014-2015 grant Recipients A Closer Look 22 MVRF Research Update 23 Recipe for good Eye Health The Newsletter of the Macula Vision Research Foundation SpringSummer 2015 IN THIS ISSUE 100 of every dollar you donate goes directly to research M A C U L A V I S I O N R E S E A R C H F O U N D A T I O N WHATS NEW AT MVRF THANK YOU we are grateful for your generous gifts in 2014 We recently launched our Believing is Seeing 2020 Campaign See what our new grantees have to say Funding Visionary Research 2 Macula Vision Research Foundation SpringSummer 2015 FROM OUR CO-FOUNDER Dear Friends of MVRF Eighteen years ago when Herb and I started MVRF little was known about macular degeneration and there was limited interest in supporting research on AMD and retinal diseases despite the fact that the number of people with low vision was growing. A lot has changed in two decades. Now much more is known important discoveries have been made in vision research and our scientists believe that a cure for macular degeneration is imminent. We are so thankful for the wonderful people who have helped and continue to help make this happen - our determined researchers the low vision community and their families who we help through our SupportSightSM program and our generous MVRF donors. In this issue we recognize those who gave in 2014. With your support you are helping to fulfill the vision that Herb and I had of a world where everyone can see clearly. Please accept our heartfelt gratitude and remember that in the research we have helped to fund so far and in the even more important work to come our goal is to reward your support and dedication with a cure. It may come in the discovery of a new drug a surgical procedure or some combination thereof. It will come. Warmest regards Karen Lotman Co-Founder 3 Macula Vision Research Foundation SpringSummer 2015 FROM OUR ExECUTIVE DIRECTOR Dear MVRF Friends and Supporters One of our ongoing goals as an organization is to raise awareness about macular degeneration. The more people who know about this silent devastating eye disease that impacts millions the closer we are to a cure. Many of you have already read in the news that iconic comedian Roseanne Barr disclosed she has been diagnosed with glaucoma and macular degeneration. We hope that her courage will serve as an example to inspire millions of others to share their own personal stories and experiences. When people seek information about prevention and treatments for AMD thats when they learn about the important work MVRF is doing around the world to eradicate this disease. We are leading the way to the ultimate goal finding a cure. And we cant do it without you Those who believe a goal is within reach are more driven to reach for it. Those who believe a goal is worth fighting for are more willing to fight for it. And those who believe a goal is in sight are more likely to see it achieved. Thank you for believing... Dawn Prall George Macula Vision Research Foundation MVRFoundationMVRFoundation Macula Vision Research Foundation Macula Vision Research Foundation JOINTHETEAM Check out our social media 4 5 Macula Vision Research Foundation SpringSummer 2015 SUDOKU Fill in the blank squares so that each row each column and each 3-by-3 block contain all of the digits 1 through 9. If you use logic you can solve the puzzle without guesswork. SOLUTION ON BACK COVER WWW.MVRF.ORg 6 Macula Vision Research Foundation SpringSummer 2015 In Honor or Memory of a Loved One MVRF is proud to acknowledge those in whose memory or honor we have received donations of 1000 or more. This is a meaningful way to memorialize the passing of a loved one or celebrate the birthday or anniversary of someone close to you while having a lasting impact. Our MVRF supporters are special to us and we are honored to recognize them. If you have any questions or want to recognize a loved one please contact Deborah-Jo Essrog director of development at or 1-866-462-2852. The Life of Rocco Palermo Soldier Salesman Musician Artist He was a soldier who fought in Europe during World War II and received the Purple Heart. During his time in the service he was a Chaplins Assistant. After the war he became a watchmaker on the GI Bill for five years. In 1951 he married his wife Eleanor who he remained with for 64 years. He was a salesman who sold TVs Singer sewing machines and then became an automobile salesman for 40 years. At the age of 39 he attended Camden County Community College to take an art course he painted many pictures in oils. He was a musician he sang in church choir played the piano trumpet and fife. He also sang in a band. He had season tickets for the Philadelphia Orchestra for years and attended regularly. He was diagnosed with macular degeneration seven years ago and was treated by a local retina specialist. He received 35 Eylea injections. Because of research and the injections he never went blind and was able to maintain his eyesight until he passed away in 2014. During visits to his doctor he and his wife Eleanor read the MVRF newsletters and became familiar with the cutting edge research that the organization funds and Eleanor felt that donations to MVRF in Roccos memory would be the best way to honor him and help others diagnosed with macular degeneration. Eleanor is particularly interested in stem cell research and is confident in the progress that is being made through the grants that MVRF funds. In Memoriam Rocco Palermo We are proud to announce our new partnership with Readers Digest Partners for Sight Foundation RDPFS. The collabo- ration will enhance our SupportSightSM program with access to the additional re- sources that RDPFS offers. It will allow both organizations to assist more people in the vision impaired community through education and provide them with important information about tools and assistive technology that will empower them to remain independent. Nationally less than 10 of people with vision loss actually access low vision or vision rehabilitation services says Susan Olivo executive director of RDPFS. A general lack of awareness keeps people from going for comprehensive eye exams and accessing appropriate help and services. We are honored to partner with MVRF and help them continue and enhance the valuable and informative SupportSightSM program. About RDPFS RDPFS is dedicated to increasing the self- reliance and dignity of blind and visually impaired persons. They believe these indi- viduals should have the tools and resources necessary to lead independent productive lives. Through their support of non-profit or- ganizations that share this philosophy they are making the world easier to navigate for thousands of people every day. They are also the publisher of Select Editions Large Type books and a proud co-sponsor of the premier online re- source for people coping with vision loss. April 2015 SupportSightSM Kickoff Thank you to everyone who attended our SupportSightSM seminars in Southampton Elizabethtown PA. What a great way to kick off our 2015 SupportSightSM season Videos of our SupportSightSM seminars are available on our YouTube channel youtube.comuserMVRFoundation. Seminars are open to the public and are FREE of charge. SUPPORTSIgHTSM PROgRAM Linking patients caregivers and families affected by diseases of the retina with the most up-to-date information and knowledge Macula Vision Research Foundation SpringSummer 2015 7 The SupportSightSM program is provided through the generosity of our sponsors 8 Macula Vision Research Foundation SpringSummer 2015 We are very excited about our new campaign The Believing is Seeing 2020 Campaign is the first of its kind for the Macula Vision Research Foundation. Each gift will be matched dollar for dollar by an anonymous MVRF donor. As always 100 of all donations goes directly to cutting edge research to find a cure. In recognition of AMD Low Vision Awareness Month in February we focused on digital outreach via email blasts the MVRF website and Facebook to advertise the campaign. With gratitude to many friends of MVRF we raised 9010 which was matched for a grand total of 18020 As we go to print in honor of Healthy Vision Month in May the second phase of the Believing is Seeing 2020 Campaign is about to be launched. The more money we raise the more research we can fund. When you give to MVRF you are not just contributing to the potential for a cure that will restore the gift of sight to millions you are helping to make it happen. We value your trust and support and thank you for your ongoing partnership with MVRF. BELIEVINg IS SEEINg 2020 CAMPAIgN DONORS Thank you to all who gave to the campaign in February Macula Vision Research Foundation SpringSummer 2015 9 Anonymous 9 Linda and Al Angello Linda Aston Lee Bergeson Joan and C. Miller Biddle Ron Biron Helen Bolling Marian Boltz Caridad Borras Irving S. Bravman Elizabeth Chan Dianne and Larry Cole Susan Crist Betsy Culberson Judy Cvejkus Kenneth Cvejkus Judith Day Susan DeCrescente Pat Dereamer Linda and Harry Dolph Deborah-Jo Essrog Dolores and Joseph Farace Mark Gernerd Arthur Gersch Eleanore and George Ginader Lois Goble Robert Gould Helen Graff James and Doris Grenier Barbara and Philip Grossman Nikki Grossman Midge and Anthony Guarrera Jerry Gust Christina Harris Evelyn and George Helmke Alma Hentz Rose Horning Jennifer Jones Nancy and Frank Kadezabek Nancy and Rudy T. Lee Gaynelle Lescher Joan Loveless Michelle Lowrie Gerald and Jane Luckman Melinda Lunsford Mark McGunagle Pamela Baker MacLellan Carolyn McLaurin Angela Mosinskis George Ohlendorf Elaine Owles Pauline Pence Heidi Phelon Dawn Prall George Carol Price Daila and Arnis V. Rence Carolyn Richards Lynn Rinaldi Gerald Rounds Anthony Rudy John A. Rudy Mary Lynn Rynkiewicz Ludwig Schlecht Ida C. Scott Hilda and Gene Sharf Dr. Arlyne Taub Shockman Allen Simon Tina Sitler Leed William Slacum John J. Slota Sally Temple PhD Diana Thomas H. Germaine Tuff Stephen Tutelman Alvin Wadler Adele Weinstein Albert Wertheimer Lynn Wolheim Lynne Wynne Douglas Yingling 10 Macula Vision Research Foundation SpringSummer 2015 Anonymous 34 Marguerite Aikens Pete and Jan Albert Family Foundation Amy Alderfer Almo Corporation Alton Foundation Americas Charities Daniel and Patricia Amey Staci Anderson Andrew Lillian A. Posey Foundation Linda and Al Angello Lynn Angstadt Peter Arger Jacqueline Shepperd Arp Debby Irv Askow William J. Avery Lucille and Harry Bahm Bank of America Charitable Foundation Brian Barlaam Coleman Barnett Colin J. Barnstable The Barrett Family Foundation David and Olga A. Barron Nelda Barton Thelma Bassett Dr. John H. Bell Jr. Olivier Benrubi Estelle and Robert Benson Timothy J. Benson Penny Berman Joan and C. Miller Biddle Phoebe Thorne Birmingham Jackie Birnhak Ron Biron Linda and Carl Bisgaier Valerie Bjorn Lynda and Thomas Blanchard Irma Blumenthal Jean and Duane Bojack Audrey and Dean Bok Helen Bolling Leon Borchers Mr. and Mrs. Nelson Bowen Ann and John Boyer Lea S. Bramnick Mr. and Mrs. Richard Brandes Lance Bredvold Martin Brennan Iris Davis Brownstein Herbert Brownstein Alexander J. Brucker MD Mary Lou and Frank Burke Denny and Mary Alice Byrne Floda A. Callihan James and Constance Carino Catt Family Foundation Edward Cavanaugh Caves Valley Club Center for Vision Loss Edward and Sheila Chacker Charles and Mildred Schnurmacher Foundation Inc. Chevron Humankind Ellen and Win Churchill Mr. and Mrs. Gary L. Clawson Constance Clinefelter Norma R. Clinton Janice Coats Norman S. Cohen Donna H. Cohen Shay Collier Jo Ann and Barry Collier Connie and Irvin Pund Foundation John F. and Adrienne E. Conway Mike and Tina Corcoran Jane A. Costello J. Drew Coyle Thank You TO OUR 2014 DONORS 11 Macula Vision Research Foundation SpringSummer 2015 100 of every dollar you give goes directly to research. All expenses are paid by the Karen and Herbert Lotman Foundation. Cynthia and Harvey A. Creem Anne Wallace Crighton Mary Crockenberg Peg Crosley Jan Cruze Rosemarie Cufalo Betsy Culberson Judy and Kenneth Cvejkus Michael Cvejkus Giulio DAngio M.D. Susan Dash Dash Love Inc. Mr. and Mrs. James A. Davidson Mr. and Mrs. Ed Delate Michael Devine Jane S. Diseroad Donald and Patricia Diseroad The Donald Sylvia Robinson Family Foundation The Donald B. and Dorothy L. Stabler Foundation Joanne and Bernard Dougherty Sharon M. Dovick Maria and Dennis Dudek Janet and Alan Dukart Mr. and Mrs. John Durante Kathryn and Robert Earley Edith C. Blum Foundation Inc. Helen and Charles Ehlers Jane Ellington Steven Emmerich Eleanor B. Epstein Audrey Evans Larry Falk Stephen S. Fehr Wendy Felson and David Goodman Joe and Mary Fenkel Mr. Carmen Ferro Felicia Fink Stella and Gordon Fink Warren Fink Stephen J. Finnegan Amy and Jon S. Fisher Alan and Frances Flashner Jody Forchheimer and Louis Kaplow Robert Fournier Bob and Penny Fox Irwin Frankel Mrs. Joy Frayer Lois and P. Richard Frieder Harriet Friedman Rhoda Louis Fryman Marge Funicello Lori and Simon Furie Chris Gabriel Joseph and Amale Gaffney Joyce Gamburg Michael Gard Joan L. Garde K.R. Garr and A. Garr Gartner Matching Gift Center William Theodore Gary Dr. and Mrs. Stephen Garza GE Foundation Robert Geiger Genentech a member of the Roche Group Joseph George Mark Gernerd Elizabeth Gersch Ethel Gibbs Janice Kuntz Gill and Ted R. Gill Jeanette Scott Gillison Drs. Brian and Bonnie Gilman Eleanore and George Ginader GlaxoSmithKline Foundation William Glaze Richard T. Goalwin Lawrence Goldberg Henry Donna Gonzalez Judi and Bruce Goodman GPX Realty Management LLC Mr. and Mrs. Brent R. Granger Tracey and Thomas Gravina Ronald Gray MelvinGreenfield David Greenman Charles Griffis Barbara and Philip Grossman Nikki Grossman Sally and Leonard Grossman Vahan H. Gureghian Richard Gurman Elaine and Frank Hagerty William P. Hall Rich Halverson Robert and Helen Hamilton Charles Hardesty Isabelle Harding Richard Harmon Harriette S. and Charles L. Tabas Foundation Janet S. Hay G. Winfield and E. Jacqueline Hedrick Greg Heinzinger and Kerstin Pfann LouiseHemmingsen Milton Hendricks Hank and Carol Herman Gladys and Murph Hertzfeld David Heward 12 L. Harvey Hewit Sandy Hicks Mary Hirlemann Jean Hoechst William Hoffman Elaine Hollo C. Edward Hoppes Chandler Horton Don Howard Richard A. Hudson Dr. Dale Huffman Judy Hunt Hydraulic Supply The Hyman Family Isdander Company LLC Jack and Pauline Freeman Foundation George Jacobs Lisa Jannucci Jennings Blanche M. Johnson Leda H. Jomeruck Robert Jonson JW Properties Nancy McPhillips Stephen Kaiser and Jan Cunningham Ron and Rachelle Kaiserman Joyce Kantor Karen and Herbert Lotman Foundation Katherine Katchen Francine and Steve Katz Harold Katz Aaron Kavulich Kathryn Kehoe Carole A. Kelly Geraldine Kennedy Joseph Kenney Donald J. Kester Beverley Ketel Henry N. Keyser Keystone Foods Equity Group - North Carolina Keystone Foods LLC Mr. and Mrs. J. Kevin Kilbane Carole and Walter Kilik B. Robert Kill Christine Killough Steve and DeAnna Kinney Linda Jack Kirshner Elizabeth Carey Kish Carole Harry Kissinger Gladwyne Montessori School Evelyn and Maury Knape Malcolm and Meredith Knapp Estate of Lorine Knutson Deborah Kogler Michael J. Korngut Marcia Gary Krasicky Annette Kravitz Victor Kukel Mr. and Mrs. Edward Lack Dr. and Mrs. Scott Lampert Elaine and Manny Landau Lankenau Medical Center Jay Larsen Cammy and Terry Larsen Joan C. Laszcz Gloria Antoine Latour Regina Adam Lawrence Joel S. Lawson III Nancy and Rudy T. Lee Tish Lehew Jane E. Lellis Leon L. Levy Associates Inc. Harriet and Herbert Levine Ann Steve Levit Efrat Levy Seh Seh Lin Emma and Joseph Lipsky Margelle and Shelly Liss Janet L. Liss Jim and Rosemary Long Arline Jolles Lotman JD MA ADR Louis N. Cassett Foundation Jon Lubert Lubert Family Foundation Inc. Ms. Virginia Lucas Samuel and Marcia Lundy Melinda Lunsford Lutheran Foundation of Texas Ms. Elizabeth S. Lynch Pamela Baker MacLellan Dorothy Magen Bruce and Margaret Mainwaring Samuel P. Mandell Foundation Evelyn and Russ Marker Amy M. Marple Denise Marroni Martha W. Rogers Charitable Trust Terence Martin Scott J. and Lynne N. Mason Francis I. and Shirley M. Maurer Max Goldenberg Foundation Robert McCord Richard and Janet McCoy Bill McDermott McDonalds Corporation McDonalds Foundation McElroy Family Trust Artie McEwan Mark McGunagle Carolyn McLaurin F. William and Katherine H. McNabb Barbara DeCastro and Skip McNeal Elizabeth McShane Marilyn and Charles S. Mechem Jr. Fund of the Greater Cincinnati Foundation Mary Meehan Macula Vision Research Foundation SpringSummer 2015 THANK yOU TO OUR 2014 DONORS 13 Ed and Lynn Metzger John D. Meyer Salli and Stephen Mickelberg Mid-Atlantic Family Restaurants Wallace and Lin Migura The Wheeler Family Foundation Jonathan Miller Kendal Miller D.L. Miner Construction Inc. Eugene Minor Jule and Leroy Miracle John Mohler Robert Laurie Molday Richard L. Morgan Janet Morgan Andrea and Alvin Moses Brigitta Mottes Joan Mullins David and Barbara Murphy Karyn and Charles Murray Nancy A. Myers and Jerome L. Myers MD Theresa and John Myers Andrew Naglak Henry N. Nassau Ann and Julius Nemeth Newly Weds Foods John Newquist Ralph Nixon Norman C. Ray Trust Nan Norton Novartis Anita Novembre Marjorie Kaiz Offer George Ohlendorf Marcha Loe Ollason The Olszewski Family Charitable Fund Optelec U.S. John R. Orovets Rufus M. Overlander III Elaine Owles John and Susan Parker Barbara and David Partington David Pastrick Kevin Patterson Dina and Leonard Pavel Robert Pearse Pelino and Budenz Families Donald Guy Pelino Bob and Edith Penick Penn Emblem Company Phil Ad Mac Inc. Philadelphia Eagles Edward and Kay Philipps Susan Philips Claire Polstein Alan Poole Thomas Pope Joseph Poveromo Dawn Prall George Stacy and Robert Pressman Anne Pritchett Diann and Martin Quinlan Frank Quinn Mr. and Mrs. Michael Rabena Rae S. Uber Trust Nick Ranieri Beatrice J. Rasiwala George Rayl Diane Raynes Diane and Michael Richard John A. Richards Catherine Bowes Rickman Mr. and Mrs. Carl Ring Jr. Milton Ritter and Rita Wolf Hugo and Kathy Ritzenthaler Roberta and Ernest Scheller Jr. Family Foundation James M. Roberts Barbara Rocks Rocks Family Foundation Ronald McDonald House Charities of Southeastern MI Vanessa Rose Theodore Rosen Judy and Richard Rosenbleeth Philip J. and Julie C. Rosenfeld Dr. and Mrs. Scott E. Rosenthal Wayne Rosenwinkel Idell and Marvin Rosner Evelyn Rossetti Jane Roth David and Ruth Rowe Marcia and Ron Rubin John A. Rudy Anthony Rudy Donald Rushin S. Paone Inc. Mrs. Lois Sachs Sage Vision Technology John Poth Saks Fifth Avenue The Samaha Family Mr. and Mrs. George W. Samson Dr. Renata Sarno Barbara and Howard Sarrett Paul D. and Janet C. Schrage Charitable Fund Walter and Janet Schuchmann Matthew Schure Herb Schwabe Ann and Richard Schwarz Robert L. Seay Dolores and William Seiberlich Cornelia H. Seidel Joseph Sekellick Joseph Senn R.A. Shafer Eli Shapiro Irv Sharf Hilda and Gene Sharf Christopher Shirley Dr. Arlyne Taub Shockman Genevieve Shuler Martin Shuwall Macula Vision Research Foundation SpringSummer 2015 14 Macula Vision Research Foundation SpringSummer 2015 Sickles Charitable Fund Virginia and William Sikes James Silverman Leigh Silverstein Sandy Silverstein Allen Simon Debra Sinclair Amy L. Singer Mr. Mrs. John Slota Cloyce Edward Smith Susan Smith Argyl Foundation Ruth and Alan P. Smith Dorothy A. Smith Robert Snider Dolores and John Snodgrass K L Gates LLP Space Tech and Research Foundation Joan and Bernard Spain Lloyd and Rosemarie Spangler Sean Debra Speck John M. Stack Mr. and Mrs. Dennis Staley Peggy C. Stanley Carl Steele Linda Stewart Alene Stone James W. Stuart and Parklawn - Wood Funeral Home Helen A. Swedenborg Ruth M. Switzer Mary C. Szczepanski Hans and Nelly Thalheimer The Christine John Connolly Foundation The Conston Foundation The HAVI Group Linda and Dexter Thede Mr. and Mrs. Paul Thompson III Joseph Todoroff Carolyn Hewes Toft Joe and Pam Tortora Michael and Linda Troianiello Rita Troilo Gilbert and Lucille Tucker James and Elizabeth Tutelman Matthew Tutelman Irving Tyler Ms. Barbara L. Urbut Mr. Michael W. Urbut and Ms. Sarah Urbut Joseph Varricchio James B. Vasile Vaughn Family Kenneth J. Veit Trina and Adam Venit Michael Verghies Mary and Thomas Vicenik Nhan Vo Karen von Elten Carol Vorchheimer Alvin Wadler Estate of Beverly Wahnish Earl Walborg The Walt Disney Company Foundation John and Martha Ward Dorothy Wasserman Dr. and Mrs. Robert Watson Marlene Weinberg Al and Phyllis Weingerten Doris Weiss Harriet and Larry Weiss Carole and Jay Weitzman Roger Weltman Amy A. Fox and Daniel H. Wheeler Wheeler Family Charitable Foundation The William P. Goldman Brothers Foundation Mr. and Mrs. Ken Williams Fred and Carol Williams Cheryl and Robert Williams Herb Wilson Tom Wilson Larman Wilson Richard Wisniewski Elaine Wolf Marcia and Dennis Wolk Richard D. Wood Tom and Susan Wood David R. Woodside Michele S. and Jack D. Wuerstle Robert Yeske Joan and Sid Yuskovitz If we have misspelled or omitted your name please accept our sincere apologies and let us know so we may correct our records. We make every effort to list your name according to your personal preference. Due to space considerations we recognize donors who give 100 or more. However we are truly grateful for every donation and we thank all of our MVRF supporters for helping in every way. CHOOSINg THE RIgHT SUNgLASSES Have you started planning your summer ac- cessories shorts swimsuits sandals and sun protection for your skin and eyes Thats right sun protection for your eyes are sunglasses Fashion aside sunglasses play a very important role in protecting your eyes from the harmful rays of the sun. These harmful rays are called ultraviolet radiation UV rays. There are three types of UV rays UVA UVB and UVC. UVA UVB are the ones that reach the eye. Macular degeneration is just one of many eye diseases that can be caused by or exasperated by UV exposure. UV radiation is reflected off surfaces such as snow water and sand. The greatest exposure occurs during the mid-day hours from 10 a.m. to 3 p.m. and longer during summer months. Individuals whose work or recreation involves lengthy exposure to sunlight are at the greatest risk. Protect yourself from harmful UV rays by using both a brimmed hat or cap and UV absorbing eyewear. UV filtered sunglasses provide the greatest UV protection particu- larly when they have a wraparound design. Ideally all types of eyewear including prescription spectacles contact lenses and intraocular lens implants should absorb the entire UV spectrum. UV filters do not interfere with vision. When buying sunglasses look for sunglasses that protect you from 99 to 100 of both UVA and UVB light. This includes those labeled as UV 400 which refers to protection from 400 nanometers all of UVA and UVB. Consider wraparound sunglasses to prevent harmful UV rays from entering around the frame and protect more of the skin around your eyes. The degree of darkness of the lens has no effect on UV protection. Tint color is your preference of how you want to see the world. However amber and plum colored lenses tend to be very popular among individuals with macular degeneration because they do not distort colors and they provide good contrast. Yellow lenses are also popular because they work well in low light reduce haze and increase contrast for a sharper image. Polarized lenses are the best to reduce glare especially around the water. Look great and stay protected all year long by Deborah M. Kogler L.D.O. Magnifiers More 15 Macula Vision Research Foundation SpringSummer 2015 Checklist for Sunglasses UV protection 99-100 Wrap around style good coverage of skin around eye Polarized lenses if possible Lens colors amber plum yellow or grey This month we are thrilled to launch We Will our new planned giving program. The We Will program was created to enable individuals to include MVRF in their estate planning. You can choose to make a gift to MVRF that would provide you with life income or make a bequest. Planned giving is an ideal opportunity to leave a legacy that will have a significant impact on the future of macular degeneration and vision research. The eyes are the window to the soul and the way we see the world. Join with us as we work to change the world by finding a cure for macular degeneration As with any gift to MVRF 100 of your planned gift goes directly to fund the research. MVRF encourages the following planned giving opportunities Life Income gifts - Charitable Gift Annuities Charitable Remainder Annuity Trusts Charitable Remainder Unitrusts and Charitable Lead Trusts1 . Bequests - provisions in your will to MVRF. The ultimate gift. gifts of Life Insurance - A donor can designate MVRF as the beneficiary of an existing life insurance policy. Although there is no tax deduction for making this revocable gift the donors estate will be entitled to an estate tax deduction if the insurance proceeds are ultimately paid to MVRF. 16 Macula Vision Research Foundation SpringSummer 2015 We Will MVRF ANNOUNCES NEW PLANNED gIVINg PROgRAM 17 Macula Vision Research Foundation SpringSummer 2015 A Perspective on Lifetime gifts As an estate planning attorney my clients have found planned giving to be personally rewarding. Lifetime gifts to non-profit organizations and charities allow the donor during their lifetime to see the impact of their kind heartedness. Many times planned giving is directed to a charity the donor was involved in or connected to during their life. Other times the gift is directed to a non-profit research organization like the Macula Vision Research Foundation MVRF with a focus on finding a cure to a disease that has personally impacted the donor or their family. I have witnessed firsthand how a planned gift made to MVRF by one of my clients has allowed her and her family to feel an incredible sense of self-satisfaction resulting from a lifetime of hard work and personal sacrifice. Also like with most charitable giving there may be significant tax advantages both during life and through an estate that provide additional benefits and reasons for the donor to make a planned gift. I always advise my clients that you dont have to be wealthy to make a planned gift. I encourage them to remember this simple yet meaningful phrase If people who can make a difference dont make a difference what difference will it make Travis L. Fliehman Esq. Detling Harlan Fliehman Ltd. Greenville Ohio Have you considered naming the Macula Vision Research Foundation in your estate planning We encourage you to consult an attorney for estate planning purposes or an accounting professional for advice on what may work best for you in order to accomplish your personal financial and charitable goals. If you would like more information and to speak with us about the We Will program please contact Deborah-Jo Essrog director of development at 1-866-462-2852 or 1 Annuity rates set as per the American Council on Gift Annuities. Your eyes will always be closer to your soul than to any other part of your body except the heart. Sorin Cerin Wisdom Collection The Book of Wisdom 18 by Lili g. Kaplan MD Lawrence J. Singerman MD Retina Associates of Cleveland What is Charles Bonnet Syndrome I see things that are not there I see faces and people who do not exist. I am embarrassed to tell my children because they will think that I am crazy. My mind is still sharp but I am scared and worried. This started when I lost my vision due to macular degeneration Clara stated in anguish. Clara suffers from Charles Bonnet Syndrome a relatively common condition in which people who have decreased vision see complex vivid repetitive images that are not real. This occurs in people who have central vision loss from eye conditions such as macular degeneration diabetes and glaucoma. The hallucinations in Charles Bonnet Syndrome are not due to psychiatric conditions and are not due to Alzheimers disease. People are often afraid to discuss the hallucinations with family and doctors and therefore do not get the help that they need. Charles Bonnet Syndrome was first described by and is named after an 18th-century Swiss philosopher who wrote about his grandfather who had visions after he became blind from cataracts. He saw men women buildings artwork and animals that did not exist. In Charles Bonnet Syndrome people can see a variety of images including colored patterns people cartoons animals or trees. Sometimes the visions are in black and white and sometimes they are in color. Some people see simple repeating patterns while others see complicated images such as landscapes faces or animals. The images might be life-size or smaller or larger than life-size. They can last a few minutes or for several hours. The visual hallucinations seen in Charles Bonnet Syndrome do not involve other senses such as smell hearing and taste. People understand that what they see is not real. Macula Vision Research Foundation SpringSummer 2015 Unfortunately visual hallucinations caused by Charles Bonnet Syndrome can be very bothersome can create stress and can affect a persons activities. Understanding the reason for the visual hallucinations can help people to cope with the condition. Some find that talking to other people such as friends family or a mental health professional can help them cope. There is no proven drug that can stop the hallucinations. However some drugs can worsen hallucinations so you may want to discuss your medications with your primary care doctor. There are simple things that people can try in order to decrease their hallucinations. People sometimes find that they can stop the hallucinations by changing their activity or environment or by standing up. At times the images may disappear if you close your eyes and open them quickly or move your eyes rapidly. In some cases concentrating on something can cause the hallucinations to stop. For some people their symptoms are worse when they feel tired or stressed so you need to try to sleep well and reduce your stress levels. The good news is that the hallucinations are usually not permanent and can often become less frequent over time. Keep in mind that medical conditions such as Parkinsons disease stroke Alzheimers disease and mental illness can all cause hallucinations. The hallucinations seen in these medical conditions are different. Charles Bonnet Syndrome does not increase your risk of developing these more serious medical problems. About Retina Associates of Cleveland Retina Associates of Cleveland is a group practice of ten ophthalmologists who specialize in the diagnosis and treatment of retinal disorders including age-related macular degeneration and diabetic retinopathy. There are nine convenient office locations throughout Northeast Ohio including Akron Beachwood Lakewood Lorain Mentor Middleburg Heights Strongsville Warren and Youngstown. Visit to learn more. 19 Macula Vision Research Foundation SpringSummer 2015 The Macula Vision Research Foundation MVRF is not a healthcare provider and nothing in this newsletter is intended as a substitute for professional medical advice diagnosis or treatment. Seek the advice of your physician or other qualified healthcare providers regarding any questions about your medical condition medical devices or treatment options. Kazuko Nishikura PhD Professor at The Wistar Institute Philadelphia PA In one word what does the future look like for a cure Exciting What is the goal of your research A new model for AMD pathogenesis has re- cently emerged. Alu RNA is transcribed from retro- transposons reminiscent of ancient viruses that invaded and spread over the human genome. Recent studies indi- cate that Alu RNA accumulation triggers programmed cell death of retinal pigment epithelium RPE cells revealing a previ- ously unexplored abnormality that under- lies the molecular pathogenesis of AMD. Our research focus has been on a phe- nomenon called RNA editing which al- ters genetic information through action of ADAR proteins. My group identified the first ADAR gene family member ADAR1. Interestingly the most common ADAR1 target is the above-mentioned Alu RNA. In this research proposal we will explore our hypothesis that a reduction of ADAR1 levels plays a role in the pathogenesis of AMD. Our proposal addresses a truly innovative and previously untested hypothesis and the outcome of this re- search will initiate a major change in the conventional view on AMD mechanisms. In addition the outcome of this proposal may have a significant impact on the diagnosis and prevention of AMD. Rachael Pearson PhD Reader in Developmental Neuroscience and Royal Society University Research Fellow at UCL Institute of Ophthalmology London In one word what does the future look like for a cure Optimistic What is the goal of your research Photoreceptor transplan- tation is a promising strategy for reversing the loss of vision following retinal degeneration. We have previously shown that donor photoreceptor cells need to be at a particular stage of their development at the time that they are transplanted for the transplant to be successful. These cells can be considered as transplantation-competent cells. We are now developing stem cell-derived photoreceptors with colored reporters that are produced by the cell at specific points in its development. We expect that this will allow us to precisely define the beginning and the end of the period of transplanta- tion- competence and allow us to select 20 Macula Vision Research Foundation SpringSummer 2015 OUR 2014-2015 gRANT RECIPIENTS A CLOSER LOOK This year we awarded four new grants to scientists conducting groundbreaking research in the field. We asked our new grant recipients to answer a few questions about their work and the future of macular degeneration. Heres what they said only transplantation-competent donor cells and improve transplantation efficiency. Srinivas R. Sadda MD Professor of Ophthalmology Director Medical Retina Unit Ophthalmic Imaging Unit Doheny Image Reading Center Doheny Eye Institute David Geffen School of Medicine UCLA Los Angeles CA In one word what does the future look like for a cure Promising What is the goal of your research Advances in camera and image processing technol- ogy have evolved to the point that we can take pictures of the eye and see the individual retinal cells responsible for our eyesight. In the eyes of patients with macular degeneration we are now able to see the abnormalities that develop with age such as the drusen deposits that accumulate under the macula. The goal of our research is to take advantage of these new diagnostic technologies and utilize advanced computer software analysis to automatically extract as much information from the images of the eyes as possible. This will allow us to better understand the sequence of events that occurs during the development of macular degeneration and better design new treatments to ultimately cure this blinding disease. Nadia K. Waheed MD MPH Assistant Professor in Ophthalmology at Tufts University Medical School Boston MA In one word what does the future look like for a cure Very bright What is the goal of your research We are using new imaging modalities to explore how blood flow changes in the choroidal layer of the eye in pa- tients who develop wet macular degeneration and whether these changes are a cause of or a result of the wet macular degeneration. To do this we will use a prototype imaging device developed by Dr. Fujimotos group at MIT that can image the vascuature of the eye without the need for any invasive procedures such as dye injections. We hope this investigation will give us new insights into how wet macular degeneration starts and the stages in its evolution that will help us identify effective treatments for the disease. To date MVRF has granted more than 21 million to vision research around the world. Macula Vision Research Foundation SpringSummer 2015 21 MVRF RESEARCH UPDATE MVRF supports pioneering research on age- related macular degeneration AMD and early onset retinal degenerative diseases that are a major cause of blindness in the world. Specific areas of research include 1 the iden- tification and characterization of genetic mo- lecular and cellular mechanisms underlying retinal degenerative diseases 2 the develop- ment and application of drug gene and stem cell based approaches as treatments to pre- vent or slow vision loss in AMD and early onset inherited retinal degenerative diseases and 3 the design and implementation of state of the artdiagnostic optical imaging techniques. MVRF grant awardees have made significant progress over the past year as indicated in several examples highlighted below. In one study next generation sequencing is being used to identify novel disease-causing mutations in theABCA4 gene associated with Stargardt disease a common early onset macular degeneration associated with severe loss. The identification of novel disease- causing mutations is important for proper genetic counseling and the development of variant-specific therapies for Stargardt disease as we move towards personalized medicine. In another project funded by MVRF a bio- chemical pathway that leads to photore- ceptor cell death is being analyzed at a molecular and cellular level. Myriocin a pharmacological agent known to inhibit a spe- cific step in this pathway has been shown to significantly slow photoreceptor cell death in animal models for retinal degenerative dis- eases. This drug also acts as an anti-inflam- matory agent thereby reducing secondary immune-associated responses which can contribute to the severity of retinal degenera- tive diseases. These studies provide a basis for further evaluating Myriocin in various retinal degenerative diseases includingage-relatedmaculardegeneration. Success in these preclinical studies will lead to future Phase I clinical trials. genetic studies have shown that variants in the complement factor H gene and other complement genes increase ones risk of getting AMD. Suppression of complement activation should prevent or at least slow pho- toreceptor degeneration and loss in vision. In one approach gene therapy is being used to deliver factors which inhibit complement acti- vation in retinal pigment epithelial RPE cells. RPE cells are crucial for photoreceptor sur- vival and play a central role in the ocular im- mune response. Ongoing studies supported by MVRF point to the potential importance of limiting complement activation as a means to reduce photoreceptor cell loss. A potential powerful approach to recover vi- sion in individuals with vision loss from retinal degenerative diseases is to regenerate pho- toreceptors andor retinal pigment epithelial RPE cells. MVRF is funding a number of studies exploring the application of stem cells as a means to regenerate photore- ceptor and RPE cells that are lost as a re- sult of retinal degenerative diseases. In one study in progress efforts are underway to re- program human RPE stem cells into photore- ceptor cells for transplantation. 22 Macula Vision Research Foundation SpringSummer 2015 by Robert S. Molday PhD Director Center for Macular Research University of British Columbia Vancouver BC Chairman MVRF International Scientific Advisory Board 23 Macula Vision Research Foundation SpringSummer 2015 RECIPE FOR gOOD EyE HEALTH Quick Kale with Bacon and Onions Makes 6 servings serving size about 34 cup and 1 lemon wedge Contains the carotenoids lutein and zeaxanthin found in green leafy vegetables for good eye health. Ingredients 2 teaspoons olive oil 1 cup chopped onion 10 cups chopped kale divided 12 cup fat-free less-sodium chicken broth divided 14 teaspoon salt 18 teaspoon crushed red pepper 18 teaspoon black pepper 2 bacon slices cooked and crumbled 6 lemon wedges Directions 1. Heat oil in a Dutch Oven over medium-high heat. 2. Add onion to pan saut 6 minutes or until onion is tender and begins to brown. 3. Add 5 cups kale 14 cup broth salt and peppers to pan. Cover reduce heat and cook 4 minutes. 4. Add remaining 5 cups kale and remaining 14 cup broth to pan. Cover and cook 16 minutes or until tender stirring occasionally. 5. Sprinkle with bacon. 6. Serve with lemon wedges. Enjoy Thanks to for this great eye healthy recipe. MVRF welcomes your submissions to SupportSightNewsSM . If you have an article personal experience or tip that you think would benefit our readers please submit your materials to Nikki Grossman marketing communications coordinator at We look forward to hearing from you. 100 of every dollar you donate goes directly to research Macula Vision Research Foundation One Tower Bridge 100 Front Street Suite 300 W. Conshohocken PA 19428-2894 SupportSightSM program funded by WWW.MVRF.ORg 1.866.4MACULA 1.866.462.2852 SpringSummer 2015 Answers for Sudoku puzzle from p. 5 NO ONE DOES WHAT THE MACULA VISION RESEARCH FOUNDATION DOES Please do not be confused by organizations with similar names. Macula Vision Research Foundation MVRF devotes 100 of your donation to research. That guarantee will always be included in our appeals and communications. Thank you again for your continued interest and support.