<div dir="ltr"><div><div class="gmail_default" style="font-family:tahoma,sans-serif;font-size:small">Hello all: </div><div class="gmail_default" style="font-family:tahoma,sans-serif;font-size:small"><br></div><div class="gmail_default" style="font-family:tahoma,sans-serif;font-size:small">Please see below for a research opportunity for those who have Stargardt Syndrome. I am not affiliated with this study so please contact the appropriate people in the email below. </div><div class="gmail_default" style="font-family:tahoma,sans-serif;font-size:small"><br></div><div class="gmail_default" style="font-family:tahoma,sans-serif;font-size:small"><br></div><div class="gmail_default" style="font-family:tahoma,sans-serif;font-size:small">Thanks, </div><br clear="all"></div><div><div dir="ltr" class="gmail_signature" data-smartmail="gmail_signature"><div dir="ltr"><div style="color:initial">Stacie </div><div style="color:initial"><br style="color:initial"></div><div style="color:initial">Stacie Leap </div><div style="color:initial"><span style="color:initial">President, Greater Philadelphia Chapter &</span></div><div style="color:initial"><span style="color:initial">President, Pennsylvania Organization of Blind Parents (POBP), </span></div><div style="color:initial"><span style="color:initial">National Federation of the Blind of Pennsylvania </span></div><div style="color:initial"><span style="color:initial"><br style="color:initial"></span></div><div style="color:initial"><span style="color:initial"> </span><a href="mailto:stacie.leap@gmail.com" target="_blank">stacie.leap@gmail.com</a><span style="color:initial"> | 215-776-6741</span></div><div style="color:initial"><br style="color:initial"></div><div style="color:initial"><span style="font-family:Calibri,Arial,Helvetica,sans-serif;font-size:18px;text-align:justify;color:initial">The National Federation of the Blind advances the lives of its members and all blind people in the United States. We know that blindness is not the characteristic that defines you or your future. Every day we raise the expectations of blind people, because low expectations create obstacles between blind people and our dreams. Our collective power, determination, and diversity achieve the aspirations of all blind people.</span></div></div></div></div><br><br><div class="gmail_quote gmail_quote_container"><div dir="ltr" class="gmail_attr">---------- Forwarded message ---------<br>From: <strong class="gmail_sendername" dir="auto">Downing, Patrick</strong> <span dir="auto"><<a href="mailto:patdowning@pa.gov">patdowning@pa.gov</a>></span><br>Date: Wed, Jan 14, 2026 at 6:40\u202fPM<br>Subject: Fw: Partner News: Clinical Trial Recruitment for Patients with ABCA4-Related Stargardt Disease<br>To: Stacie Leap <<a href="mailto:stacie.leap@gmail.com">stacie.leap@gmail.com</a>><br></div><br><br>Hi Stacie,<br>
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Can you get this resource out below to more people?! Or especially the members with you know with Stargardt disease.<br>
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Patrick Downing (he/him)| Vocational Rehabilitation Counselor, MSW<br>
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Labor & Industry | Office of Vocational Rehabilitation<br>
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Bureau of Blindness and Visual Services | Philadelphia<br>
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801 Market St., Suite 6034 | Philadelphia, PA 19107<br>
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Phone: 215.929.4364 | Fax: 215.413.0608<br>
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Office Hours: 8:00 AM \u2013 4:00 PM<br>
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<a href="http://www.dli.pa.gov/ovr" rel="noreferrer" target="_blank">www.dli.pa.gov/ovr</a><<a href="http://www.dli.pa.gov/ovr" rel="noreferrer" target="_blank">http://www.dli.pa.gov/ovr</a>><br>
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________________________________<br>
From: Kerrigan, Patricia <<a href="mailto:pkerrigan@pa.gov" target="_blank">pkerrigan@pa.gov</a>><br>
Sent: Wednesday, January 14, 2026 3:33 PM<br>
To: LI-OVR-BBVS-Phila <<a href="mailto:li-ovr-bbvs-phila@pa.gov" target="_blank">li-ovr-bbvs-phila@pa.gov</a>><br>
Subject: FYI: Partner News: Clinical Trial Recruitment for Patients with ABCA4-Related Stargardt Disease<br>
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Good afternoon all, sharing FYI good news Re: Clinical Trials for Stargardt's,<br>
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Maurie Kerrigan | COMS,CLVT [cid:image001.jpg@01DC856B.27DC0DC0]<br>
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Orientation and Mobility Specialist<br>
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Low Vision Therapist<br>
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Phone: 215.268.2872<br>
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<a href="mailto:pkerrigan@pa.gov" target="_blank">pkerrigan@pa.gov</a><mailto:<a href="mailto:pkerrigan@pa.gov" target="_blank">pkerrigan@pa.gov</a>><br>
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Begin forwarded message:<br>
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From: Foundation Fighting Blindness <<a href="mailto:membership@fightingblindness.org" target="_blank">membership@fightingblindness.org</a><mailto:<a href="mailto:membership@fightingblindness.org" target="_blank">membership@fightingblindness.org</a>>><br>
Date: January 13, 2026 at 2:30:38\u202fPM EST<br>
Subject: Partner News: Clinical Trial Recruitment for Patients with ABCA4-Related Stargardt Disease<br>
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[Foundation Fighting Blindness logo]<<a href="http://www.fightingblindness.org/?vcrmeid=WruxaV2hzEGdYLKerc7bPg&vcrmiid=KhEoLCXiJEWEmQ5IbHwRCw" rel="noreferrer" target="_blank">http://www.fightingblindness.org/?vcrmeid=WruxaV2hzEGdYLKerc7bPg&vcrmiid=KhEoLCXiJEWEmQ5IbHwRCw</a>><br>
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[Various dark blue beams with text in the middle that says,]<br>
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CELESTE Trial Now Open for Individuals with Stargardt Disease<br>
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The CELESTE study is a first-in-human Phase 1/2 interventional clinical trial to address ABCA4-related Stargardt Disease. It is sponsored by AAVantgarde Bio<<a href="https://u35158275.ct.sendgrid.net/ls/click?upn=u001.TwpWPek5144WRusuAV3MCcSykhxYRq-2F3UTeJnGsLKEiYG1jzzi-2BdB4gWlv9Wrg0F8-2B79vgZ85L-2BQZtsk-2FpPRF2TMJpVMaRlnMJczLTszqpAYQdIF6-2BwuezrIZuLVJ9VMPc6Q2lvOWitwFjzNXBUhgw-3D-3DVWN6_R7JeeiVU-2FISa3llGJQwIAFBekgh9jbcsFXWG3RMbPmO1dhAlhORgKFBR7-2F3-2Fgq85UtsHkSxEfWugYRQduSWmbIsmigDd1g061qjc1fflC22NUbVY5wxzLpCrpIFTnlyFhoZrvQQqRucwYZ-2BgtmPIZy3dfulrHmLW69svspVSLn1BaP6xLE0igeEYJEL3XN96d-2FIBujqyK2FT41Wpl4Lqg-2BLlSE5gsRR6Vv-2BL3UgG9hvD2BpY2BqoAcliYHDY2rVpjNCiYIy2P7MOanpNRV0fyEH8gd9Q-2FjD64QsTgbffQZc-3D" rel="noreferrer" target="_blank">https://u35158275.ct.sendgrid.net/ls/click?upn=u001.TwpWPek5144WRusuAV3MCcSykhxYRq-2F3UTeJnGsLKEiYG1jzzi-2BdB4gWlv9Wrg0F8-2B79vgZ85L-2BQZtsk-2FpPRF2TMJpVMaRlnMJczLTszqpAYQdIF6-2BwuezrIZuLVJ9VMPc6Q2lvOWitwFjzNXBUhgw-3D-3DVWN6_R7JeeiVU-2FISa3llGJQwIAFBekgh9jbcsFXWG3RMbPmO1dhAlhORgKFBR7-2F3-2Fgq85UtsHkSxEfWugYRQduSWmbIsmigDd1g061qjc1fflC22NUbVY5wxzLpCrpIFTnlyFhoZrvQQqRucwYZ-2BgtmPIZy3dfulrHmLW69svspVSLn1BaP6xLE0igeEYJEL3XN96d-2FIBujqyK2FT41Wpl4Lqg-2BLlSE5gsRR6Vv-2BL3UgG9hvD2BpY2BqoAcliYHDY2rVpjNCiYIy2P7MOanpNRV0fyEH8gd9Q-2FjD64QsTgbffQZc-3D</a>>.<br>
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The purpose of this study is to investigate the safety and efficacy of an investigational gene therapy called AAVB-039, which aims to slow down or halt vision loss by addressing the genetic root cause of Stargardt disease, due to variants in the ABCA4 gene.<br>
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The study leverages AAVantgarde\u2019s dual AAV technology to deliver a functional copy of the ABCA4 gene into the retinal cells via a one-time, single subretinal injection.*<br>
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Where will the study take place?<br>
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The study will be carried out at several sites in the U.S., the U.K., and Europe. All study visits, including eligibility screening, surgery, and follow-up visits, will be completed at the site.<br>
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Find out if you\u2019re eligible:<br>
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The study is recruiting participants who meet the defined inclusion criteria, including (but not limited to):<br>
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* Male or female, 8-55 years of age.<br>
* Confirmed genetic diagnosis of Stargardt disease due to variants in the ABCA4 gene.<br>
* No previous treatment with an investigational gene therapy.<br>
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There will also be additional assessments carried out at the study site to make sure the study is suitable for you.<br>
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Discover how you can take part:<br>
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For more details about the study, please visit ClinicalTrials.gov<<a href="https://u35158275.ct.sendgrid.net/ls/click?upn=u001.TwpWPek5144WRusuAV3MCd1zP7OHVTXvbNQGMYVx5OqeqqBP1P-2FtL2Ug15FzfceBrhw53dy8E9ZKPyJD54QXZKdHInLqoMchUtxVvq7p-2BcpZAoJ6vBRnHJ4XKyvRVfgDTasf5QNNRL8pJNJyPCE7e-2FTK0gJ8Wms-2F6KiIku5LHko-3Ddtrw_R7JeeiVU-2FISa3llGJQwIAFBekgh9jbcsFXWG3RMbPmO1dhAlhORgKFBR7-2F3-2Fgq85UtsHkSxEfWugYRQduSWmbIsmigDd1g061qjc1fflC22NUbVY5wxzLpCrpIFTnlyFhoZrvQQqRucwYZ-2BgtmPIZy3dfulrHmLW69svspVSLn2LzgME7DmY1R2SSt-2B9F1tPkEvNxHXAOVaotxrF6SrasLoIZVgGC7Kpe4Qu1Y6aStvJBDoKMVbtveSZA5GQA1BeMjDD-2BMzVNwc4kwdMw23xf9gPJkszk31Hda6IZVS6MkE-3D" rel="noreferrer" target="_blank">https://u35158275.ct.sendgrid.net/ls/click?upn=u001.TwpWPek5144WRusuAV3MCd1zP7OHVTXvbNQGMYVx5OqeqqBP1P-2FtL2Ug15FzfceBrhw53dy8E9ZKPyJD54QXZKdHInLqoMchUtxVvq7p-2BcpZAoJ6vBRnHJ4XKyvRVfgDTasf5QNNRL8pJNJyPCE7e-2FTK0gJ8Wms-2F6KiIku5LHko-3Ddtrw_R7JeeiVU-2FISa3llGJQwIAFBekgh9jbcsFXWG3RMbPmO1dhAlhORgKFBR7-2F3-2Fgq85UtsHkSxEfWugYRQduSWmbIsmigDd1g061qjc1fflC22NUbVY5wxzLpCrpIFTnlyFhoZrvQQqRucwYZ-2BgtmPIZy3dfulrHmLW69svspVSLn2LzgME7DmY1R2SSt-2B9F1tPkEvNxHXAOVaotxrF6SrasLoIZVgGC7Kpe4Qu1Y6aStvJBDoKMVbtveSZA5GQA1BeMjDD-2BMzVNwc4kwdMw23xf9gPJkszk31Hda6IZVS6MkE-3D</a>>, or you can contact AAVantgarde at ClinicalTrials@Aavantgarde.com<mailto:<a href="mailto:ClinicalTrials@aavantgarde.com" target="_blank">ClinicalTrials@aavantgarde.com</a>?vcrmeid=WruxaV2hzEGdYLKerc7bPg&vcrmiid=KhEoLCXiJEWEmQ5IbHwRCw>.<br>
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About Stargardt Disease<br>
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Stargardt disease is an inherited retinal dystrophy, most commonly caused by variants in the ABCA4 gene, that can start from childhood or adolescence. A protein that is needed for the normal function of light-sensing cells in the back of the eye (retina) is not produced due to an error in the ABCA4 gene. It is the most common inherited macular degeneration, affecting approximately 1 in 8,000 to 10,000 people.1 Currently, there are no approved treatments for Stargardt disease.<br>
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About AAVantgarde Bio<br>
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AAVantgarde Bio (AAVantgarde) is a clinical-stage biotechnology company advancing gene therapies for patients with inherited retinal diseases. The company\u2019s lead programs target Stargardt disease and retinitis pigmentosa due to Usher syndrome type 1B, two severe inherited retinal diseases with no approved treatments. With a strong foundation in translational science and a commitment to clinical excellence, AAVantgarde is working to bring transformative therapies to patients.<br>
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For more information, please visit the AAVantgarde website.<<a href="https://u35158275.ct.sendgrid.net/ls/click?upn=u001.TwpWPek5144WRusuAV3MCcSykhxYRq-2F3UTeJnGsLKEjoMF4MMqxjGppjhYl0tcQW8sN-2F17Zhc1B7xOUpWVAy-2BKMg0gNA4B1XeSRwPZFTxuKP6UsJBi7HKkArIm32DON4sGGTG766iP77FUBl6XDiRN7QTXTPeqz6z7jaM0YUaP0-3DN08a_R7JeeiVU-2FISa3llGJQwIAFBekgh9jbcsFXWG3RMbPmO1dhAlhORgKFBR7-2F3-2Fgq85UtsHkSxEfWugYRQduSWmbIsmigDd1g061qjc1fflC22NUbVY5wxzLpCrpIFTnlyFhoZrvQQqRucwYZ-2BgtmPIZy3dfulrHmLW69svspVSLn1FFxeBdX-2F7yjlfrzlTf9Mrug3b2Oz39Ob31Dri07l0i58l4V7FSLmIVOXbtX2hlACHAzYcj-2B2JuZPtRupgu-2FbBuNANuR-2BZ4YhagAsIG7r4-2BJwPs3VcVIZ5j3qKXm2ar3k-3D" rel="noreferrer" target="_blank">https://u35158275.ct.sendgrid.net/ls/click?upn=u001.TwpWPek5144WRusuAV3MCcSykhxYRq-2F3UTeJnGsLKEjoMF4MMqxjGppjhYl0tcQW8sN-2F17Zhc1B7xOUpWVAy-2BKMg0gNA4B1XeSRwPZFTxuKP6UsJBi7HKkArIm32DON4sGGTG766iP77FUBl6XDiRN7QTXTPeqz6z7jaM0YUaP0-3DN08a_R7JeeiVU-2FISa3llGJQwIAFBekgh9jbcsFXWG3RMbPmO1dhAlhORgKFBR7-2F3-2Fgq85UtsHkSxEfWugYRQduSWmbIsmigDd1g061qjc1fflC22NUbVY5wxzLpCrpIFTnlyFhoZrvQQqRucwYZ-2BgtmPIZy3dfulrHmLW69svspVSLn1FFxeBdX-2F7yjlfrzlTf9Mrug3b2Oz39Ob31Dri07l0i58l4V7FSLmIVOXbtX2hlACHAzYcj-2B2JuZPtRupgu-2FbBuNANuR-2BZ4YhagAsIG7r4-2BJwPs3VcVIZ5j3qKXm2ar3k-3D</a>><br>
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[LEARN MORE]<<a href="https://u35158275.ct.sendgrid.net/ls/click?upn=u001.TwpWPek5144WRusuAV3MCcSykhxYRq-2F3UTeJnGsLKEjoMF4MMqxjGppjhYl0tcQW8sN-2F17Zhc1B7xOUpWVAy-2BKMg0gNA4B1XeSRwPZFTxuKP6UsJBi7HKkArIm32DON4sGGTG766iP77FUBl6XDiRN7QTXTPeqz6z7jaM0YUaP0-3D3k30_R7JeeiVU-2FISa3llGJQwIAFBekgh9jbcsFXWG3RMbPmO1dhAlhORgKFBR7-2F3-2Fgq85UtsHkSxEfWugYRQduSWmbIsmigDd1g061qjc1fflC22NUbVY5wxzLpCrpIFTnlyFhoZrvQQqRucwYZ-2BgtmPIZy3dfulrHmLW69svspVSLn3OV7wgL-2BG5EfAXXSXHeAjBUWC3AW5wLUBOhHPLk3GVeqTP2gAPgQQX6atAFL1tA4UZb0m9Iu0pUHnBi93-2FknSA56ZpgVbMx9Lr8pfMdWGxjvHL4Anf2QyYlZKwJSW9U-2BY-3D" rel="noreferrer" target="_blank">https://u35158275.ct.sendgrid.net/ls/click?upn=u001.TwpWPek5144WRusuAV3MCcSykhxYRq-2F3UTeJnGsLKEjoMF4MMqxjGppjhYl0tcQW8sN-2F17Zhc1B7xOUpWVAy-2BKMg0gNA4B1XeSRwPZFTxuKP6UsJBi7HKkArIm32DON4sGGTG766iP77FUBl6XDiRN7QTXTPeqz6z7jaM0YUaP0-3D3k30_R7JeeiVU-2FISa3llGJQwIAFBekgh9jbcsFXWG3RMbPmO1dhAlhORgKFBR7-2F3-2Fgq85UtsHkSxEfWugYRQduSWmbIsmigDd1g061qjc1fflC22NUbVY5wxzLpCrpIFTnlyFhoZrvQQqRucwYZ-2BgtmPIZy3dfulrHmLW69svspVSLn3OV7wgL-2BG5EfAXXSXHeAjBUWC3AW5wLUBOhHPLk3GVeqTP2gAPgQQX6atAFL1tA4UZb0m9Iu0pUHnBi93-2FknSA56ZpgVbMx9Lr8pfMdWGxjvHL4Anf2QyYlZKwJSW9U-2BY-3D</a>><br>
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*Please note, AAVB-039 is an investigational drug product whose safety and efficacy has not been evaluated by any regulatory authority.<br>
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