The 2012 Children’s Low Vision Award ROPARD is honoredtopresent the 2012 Children’sVision AwardtoPaul and Colleen Ziegler for their generous support. Their interestbeganwith the birthof their son, who was an ROP baby, and continues unstintingly. Theyhave been in the forefront ofbringing ROPARD’s missiontothepublic atlarge and instrumental in the establishment of the Children’sLow VisionResource Center. Whenever there is a need identified, the Zieglershavebeenthere tohelp. Sensory Safari SensorySafariisaprogramsponsoredby the SafariClubInternational. Byusing donated and borrowed animal mounts, skins, skulls,and horns,itprovides all children and adults, but especially those people with visual impairment, with an opportunityto“see”wildlife through the sense oftouch. ThemembersoftheClubareavailableto explain the behaviorandhabitat of each animal ondisplay. Blindpeopleandtheir sighted family members have the opportunitytotouch and explore the hides and mounts and learn about each animal. Thisallows everyonetheunique experience ofgaining up-close information about the animals. Holiday Cards/Calendars Year-long Greetings! Holiday greetings and a 14 month pocket calendar all in one, with envelopes. Package of 8, $25.00 The Gift that Gives Forever Have you considered including ROPARD in your estate plan? For information contact info@ropard.org or call 1-800-788-2020. ROPARD has available for parents, family and professionals many items that are useful for the development of children with retinopathy of prematurity and low vision. Booklet Looking Ahead: A Parent’s Guide to the Development of their Child with Retinopathy of Prematurity $10.00 each Brochure A Parent’s Guide to Their Premature Infant’s Eyes (Available in English and Spanish) Package of 100 — $25.00 The AssociationforRetinopathy of Prematurity and RelatedDiseases Board of Directors JohnBaker, M.D. MargaretCooneyCasey KimberlyDrenser, M.D., Ph.D. Patrick J.Droste, M.D. Frank Giblin, Ph.D. Philip Hessburg, M.D. David S.Hooker Leslie Hooker JeffreyMaisels, M.D. Raymond Margherio, M.D.(1939-2000) Rita Margherio Kay White Meyer ThomasMcAskin, Esq. JosephM. McGlynn, Esq. Edward O’Malley, M.D. Venkat Reddy, Ph.D. CaronTrese LoriWebb GeorgeA.Williams, M.D. KimberlyWilliams Paul R. Ziegler MichaelTrese, M.D. Co-Medical Director AntonioCapone, Jr., M.D. Co-Medical Director Paula Korelitz OutreachDirector SusanCampbell AdministrativeAssistant Children’s Low Vision Resource Center By AppointmentOnly Paula Korelitz Outreach Director Rosemary Blaszkiewicz Parent Advisor 4064C W. 13 Mile Road Royal Oak, Michigan 48073 1-800-788-2020 info@ropard.org Susan Campbell Editor Paula Korelitz Website Administrator Shouldyouhave anyquestions regarding this issue,please contact ROPARD at 1-800-788-2020 or visit our website at http://www.ropard.org or e-mail us at info@ropard.org ROPARD is an association dedicated to eliminating the problems of low vision and blindness in children caused by premature birth and retinal diseases. December 2011 The Newsletter of ROPARDTimely Clinical Management Yields Good Vision in Retinopathy of Prematurity Dear Friends ofROPARD As the holidays approach, we wouldlike to thankyou for your interestand support over the last year. Thanks to your contributions, ROPARD has achievedmuch, including the opening of the “PRRL” Lab in April 2011, new researchinto FEVR andjuvenile diabetic retinopathy,ongoing researchin genetic therapy and the BLOCK-ROP study, and expansion of the Children’s Low Vision Resource Center. In April 2012, ROPARD willbe presenting the 7th Children’s Vision Awardto Paul and Colleen Ziegler in recognition of their outstanding personal contributions to ROPARD since its inception. The eventwillbe accompanied by the Sensory Safari, where children and adults can experience wild animals throughbothtouch and vision. ROPARD is gratefulto allof the generous people who have made these advances possible and we hope for your continuing interest andfinancial support. On behalfof the BoardofDirectors, Verytrulyyours, MichaelT. Trese, MD Antonio Capone, Jr., MD Co-MedicalDirector Co-MedicalDirector SavetheDatesThere are three eventsof note in 2012RetinoschisisConferenceOn March 10,2012, ROPARD willpresent a webinar conference on Retinoschisis for parents and family members. TheSeventh Children’s Low VisionAward and Sensory SafariOn April 27, 2012, The Children’s Low Vision Award willbe presentedto Paul and Colleen Ziegler in recognition oftheir dedicatedsupport ofROPARD. The award ceremony and strolling cocktailparty and sensory safari willtake place at the Sterling Inn, in Sterling Heights, Michigan. Sensory SafariOn April 28, 2012, the Sensory Safari willtake place at the Sterling Inn, in Sterling Heights, Michigan. For information on allof these events, please go to www.ropard.orgor email info@ropard.org. ALetterfromtheDirectors BLOCK-ROP In2007,ROPARDprovided funding for a clinical trial The BLOCK-ROP study, designedtoassessthesafety and tolerabilityof pharmalogic agents in infants with aggressiveposterior ROP (APROP) whohadfailed conventional lasersurgery. Elevenpremiere clinical centers with state-of-the-art neonatal intensive care units were involved inthetrial.However, this phase of BLOCK-ROP wasterminateddue toinsufficientenrollment. ROP progression withtimelyand effective laserfor APROPwasrare at BLOCK-ROP study centers: two infants were enrolledover the course of a year (unpublished data). In2011, BLOCK-ROP has grown up! A granthasbeen submittedtothe NationalEyeInstitutetofunda clinicaltrial across approximately 35 centers nationwideto evaluatethe utility of the drug,bevacizumab for alltreatment-eligible infants (Type-1 threshold ROP). The Co-Principal Investigators of this study are David Wallace,MDofDukeUniversity and AntonioCaponeJr., MD,of Beaumont Hospital,Royal Oak, MI. An increasing body of information has accumulated suggesting the potential benefit of bevacizumab for ROP.However,importantsafety and long-term outcome issues remain unresolved. The second phase of the BLOCK-ROP studyisplannedto address these issues. This study will aimto comparebevacizumab treatment with standard-of-care laser. NotificationfromtheNEIregarding funding of the study is expected in spring of 2012. Thomas Marshall Does ItAll: One Mom’sBlog Thomas Marshall enjoying a sunny dayinthepark. “Myhusband andI were elated when our son, Thomas,wasborn.He is our first and only child. But while we were still in the hospital we knew something was differentbytheway the staffwastreating us. And beforelong wehad abunch of doctors in our roomalltryingtoexamineTom.” This is how Jessica Kovacs begins her blog. Shethengoesontoshare her family’sexperiencewhenitwas established that Thomas had no visual response. Jessica createdherblogtoshare the journey ofraising her visually impaired son.Thomaswasbornin2009 withdetached retinas and has hadfivevitrectomy surgeriesandthreeglaucomasurgeries. “He currently has some vision but they don't know what he can see becauseheis atoddlerandcan'ttellthemyet. However, ThomasisarowdylittlemanwholovesJazzmusic.You canoftenfindhimflingingtoysaround, playing the keyboard or ukulele, or practicing walking.” ReadJessica’sBlog“Thomas Marshall Does It All” and share your experiences with her at www.ropard.org. Jessica Kovacs Become a Sustaining Member of ROPARD for as little as $5 or $10 a month, or any greater amount you choose. You decide the amount you wish to donate and your Visa, MasterCard or Discover will be charged the same amount each month. In gratitude for your Sustaining Membership a gift from ROPARD will be mailed to you. Make a Donation, Receive a Gift! A Daddy’s View. Biking PittsburghtoD-See. by Mike Bruno Twosummersago, I discovered biking the Montour Trail was a great father-daughteractivity for Cassie and me. In ordertosatisfyher "tactilecomfortzone”,Iratchetstrapped hercarseatinthetow-behind-cart. Itwasduringoneofour ridesthatIdecidedtodo a charitybike ridetoWashington with the plan to eventuallydothe335 milejourney ona tandembicycle with my favoritetrainingpartner, Cassie. On Memorial Day, three friends and I departed from Pittsburgh enroutetoWashington D-See.Aswewere leaving, I thought ofCassie's114day stay in the NICU at MageeWomen's Hospital.Butafewmilesdownthetrail, I realized howfarwehadprogressed and howlucky weare tohave ahealthy girl who will enterKindergarten andthe WesternPA School for Blind ChildreninAugust. Twoflattires in the first 15 miles put a strain on our schedule and ironically,wecompletedthelast10 milesof day onedowntheGreat Allegheny Passage in the dark. Thefoothillsof the Allegheny Mountainswere our starting point for day two. The views of the rushing whitewater of theYoughRiverandthegreenhillsideswerefabulous. Itwas duringourascentIrealizedthatasaparentofaspecialneeds childitismyobligationtolivemylifetothefullestinorderto beagooddad,husbandand employee.Negativity and pessimismwouldonlyhandicapme andimpede myabilities topositivelyimpactthosewhoareimportant in my life. Day three was the longest day ofthetrip,93 miles. We completed our climb overtheEasternContinentalDivide and began our descent across the MasonDixon Line. The Dr.Frank Giblin Joins ROPARD’s Board ROPARDwelcomesDr.Frank Giblin toitsBoardofDirectors. Director of the EyeInstitute atOakland University, Dr. Giblin has a PhD in Biochemistry and has conducted NIH-funded studies on the lens and cataract.He servesontheResearch Committeeforthe new OU/Beaumont Medical School and has been a strong supporter of ROPARD and the “PRRL” Lab. MikeBruno takes a break at the Mason-Dixon Line. vistaswereincredible.Hopefullythrough stemcell research and microchiptechnology my daughter and many others can witness these amazing views some day. On dayfourourjourneytook usfromHancocktoHarpers Ferry along the PotomacRiver.Wecontinuedtohandout ‘BikingPittsburghtoD-See’businesscardstoraiseawareness anddonationsforROPARD. AspecialthankstoLauraBeth Staffordformakingthecards. ItamazesmehowCassie,atonly fiveyearsold,hasinspiredpeopletobeinvolvedwithROPARD. Our last day was highlightedbythebreathtaking scenery and rushing white water ofGreatFallsMD where the towpath is richwithhistory.Weconcluded our trek and arrivedinGeorgetownin mid afternoon. Iamblessedtohave had threeof my friends participate in our inaugural rideinsupport ofROPARD. Spending a week onbikes withthem,all of various levelsoffitness, is like raising my 2 daughters—while the destination is the sameforall of us it’s all about how you enjoy the ride. Is it a calendar or is it a holiday card? It’s both! Sendayearof holiday greetingswith ROPARD’s new holiday card in the uniqueformof apocket calendar. The cards/calendars are available in packages of8for$25.To order,goto www.ropard.or emailinfo@ropard.org