MacTel Type 2: A Community Forum for Sharing Knowledge and Support

Watch the Webinar Recording

Are you living with Macular Telangiectasia Type 2 (MacTel) or have a family member who has been diagnosed with MacTel?

Learning Objectives

• Learn about MacTel: what it is, how it is diagnosed, and how it is managed
• Understand the patient experience of individuals living with MacTel
• Learn about resources available to those living with MacTel

Check out our new MacTel web page and downloadable factsheet on MacTel.

Speaker Bios

Kira Baldonado, MPH
Vice President of Public Health and Policy
Prevent Blindness

Kira is the Vice President of Public Health and Policy for Prevent Blindness- responsible for the mission-based work of the organization, focusing on program outreach, education, and policy directives. Kira, and her team of 7 staff members are working to improve our nation’s vision and eye health system by leading consensus-driven initiatives, creating accountability and improved surveillance for vision, while promoting equity and patient-engagement in each step of the continuum of vision care. She has overseen the successful launch of the ASPECT Patient Engagement Program- an advocate training program for patients and allies; the Center for Vision and Population Health at Prevent Blindness; and led the National Center for Children’s Vision and Eye Health (NCCVEH) at Prevent Blindness until 2018. Kira was named as One of the Most Influential Women in Optical for 2023 by VisionMonday and is an International Fellow with the Society of Leadership Fellows at St George’s House, Windsor Castle.

Barbara Blodi, MD
Medical Retina Specialist
Department of Ophthalmology and Visual Sciences, University of Wisconsin-Madison

Dr. Barbara Blodi is a professor and medical retina specialist in the Department of Ophthalmology and Visual Sciences at the University of Wisconsin School of Medicine and Public Health. She attended medical school at the University of Iowa and did ophthalmology residency at Bascom Palmer Eye Institute in Miami. Her residency was followed by fellowships in medical retina with Dr. Donald Gass and surgical retina at the University of Michigan. In addition to seeing patients and training medical students, residents and fellows, Dr. Blodi is the medical director of the Wisconsin Reading Center, a core imaging lab. Her research focuses on novel retinal imaging systems as well as retinal imaging biomarkers in clinical trials. Dr. Blodi’s publications focus on macular diseases including Mactel, diabetic retinopathy and macular degeneration.

Julie Grutzmacher, MSW, MPH
Director of Patient Advocacy and Population Health Initiatives
Prevent Blindness

Julie Grutzmacher, MSW, MPH grew up in Wisconsin and completed her undergraduate degree in Social Work in Minnesota. After college she joined the Peace Corps. Julie spent two years in Swaziland, Africa, where she lived and worked in a rural village providing HIV/AIDS education, mitigation, and community development services. It was during that experience that her interest in public health and health disparities was forged. After returning to the U.S., Julie completed her Masters in Social Work at the University of Illinois at Chicago, and later was employed as a social worker in the Neonatal Intensive Care Unit (NICU) at Rush Hospital. This experience cemented professional goals relating to the elimination of health disparities and improvement of outcomes for marginalized populations.

After the NICU, Julie pursued a second Masters Degree, this time in Public Health, while simultaneously working in population health management, providing care coordination and health education for high risk pregnant women in Chicago’s South Side. It was in this role that her passion for accessible and quality primary care was elucidated. She went on to co-create and manage a primary care leadership training program for multidisciplinary medical residents at the University of Chicago. Julie joined the Prevent Blindness team in May of 2020 as the Director of Patient Advocacy and Population Health Initiatives where she oversees the Center for Vision and Population Health (CVPH) and the ASPECT patient-engagement program. She is passionate about reducing all barriers to eye care.

Len Pilon
Consultant
Individual Living with MacTel Type 2

Len Pilon is an innovative curator of human-centered work experiences that impact culture, employee engagement and organizational transformation. With over 40 years of experience practicing interior architecture, workplace strategy, and business consulting, Len brings an integrated approach to organizational change. Currently moving towards retirement, he is employed part-time at CBRE Americas Consulting – Organizational Change & Transformation. Some clients include Los Alamos National Labs, HSBC, TD Bank, BNY Mellon, Ford Land, Fifth Third Bank, Yahoo, and Cummins. Len previously worked at Herman Miller & Haworth in Holland, HOK & ISI in Chicago, Interior Space and Southwestern Bell in St. Louis and Texas Instruments in Dallas.

Len has experienced cultural diversity growing up in Albuquerque, NM.  Studied Architecture at UNM and received an Architecture degree from Texas Tech University.  Len follows his passion and yearning to learn, making the journey through Dallas, St. Louis, Chicago and now Holland. Married with two sons living in San Diego and LA.  Enjoys spending time in SoCal with his wife and sons. Super big fan of University of Michigan, Margaritas, and New Mexican food.

Tiffany Troso-Sandoval, MD
Founder, Winning The Cancer Journey
Individual Living with MacTel Type 2

Dr. Troso-Sandoval is a highly esteemed medical oncologist with over 25 years of expertise in treating women’s cancers. Throughout her career at Memorial Sloan Kettering, she published over 20 research papers in prestigious medical journals and has authored a specialized publication focused on providing care for elderly patients with ovarian cancer.

Dr. Troso is now expanding her reach outside of the medical clinic to help women across the country through her company Winning The Cancer Journey.  After caring for thousands of patients with breast and gynecological cancer, Dr Troso has a passion to improve the outcome and quality of life for cancer patients by providing education, guidance and development of a winning mindset.

Although limited by her slowly progressing MacTel type 2, Dr Troso refuses to be defined by her disease and is now utilizing her skills and expertise to help others through public speaking, webinars, virtual medical consultations and workshops.  Her upcoming book “Winning The Cancer Journey” will be published early 2025 and she is also working on the development of an online interactive, educational platform for cancer patients and their caregivers.

Richard (Rich) Small
Chief Executive Officer
Neurotech Pharmaceuticals

Richard (Rich) Small is the Chief Executive Officer of Neurotech, a private clinical stage biotech company focused on developing transformative therapies for chronic retinal diseases through its core platform technology, Encapsulated Cell Therapy.

He has led the Neurotech team since 2016 and originally joined as the Company’s Chief Financial Officer in 2007. Rich has more than 30 years of both private and public life sciences experience and greater than 40 years of overall financial and operational management.

Prior to Neurotech, Rich was a founding member of Point Therapeutics, a publicly traded biotechnology company focused on developing treatments for various cancers. He served as Senior Vice President and Chief Financial Officer and contributed to taking the company public and successfully completed an array of private and public equity offerings. Previously, he served as Vice President, Chief Financial Officer at Immulogic Pharmaceutical, Inc., a publicly traded biotechnology company developing treatments for immunological-based disorders where Rich led the completion of multiple licensing deals and several public equity offerings.

Rich started his career in senior management financial and treasury roles with Dennison Manufacturing Company, and the public accounting firm of Coopers and Lybrand, LLC.

He served as a Trustee for the New England College of Optometry from 1995 to 2022, where he was Chair of the Finance and Business Affairs Committee and was a member of the Executive Committee for more than 15 years. Rich holds a BS in Business Administration from Northeastern University in Boston, Massachusetts.

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