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Picture Description: A group photo of the ASPECT alumni at the 2024 ASPECT Patient Engagement Summit.
We share stories chased with the truth.
To advocate, educate, inspire both elder and youth.
There’s power in all eye stories; ASPECT program is proof.
Changing minds, systems, and policies
by storytelling is what we do.
So don’t hesitate to reach out to the Prevent Blindness crew!
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| Brace Yourself for Greatness! | | Meet the unstoppable, unforgettable, absolutely “OUTTA SIGHT” ASPECT Team: Julie, Liz, and Jeanetta! These fierce leaders are fueled by passion and purpose, and for them, advocacy isn’t just part of the movement, it’s a lifestyle. They're a powerful trio showing the world what it means to overcome adversity by sharing eye stories for the change we want to see. | | |
“Try to be a rainbow in someone’s cloud.” – Maya Angelou
| | Picture Description: A smiling woman with curly hair is wearing a wide-brimmed burgundy hat with a patterned band, a colorful scarf, and a light-colored jacket. The background is a bright yellow, creating a warm and cheerful vibe. | | Picture description: A confident woman stands smiling, wearing large dark sunglasses, bold black-and-white earrings, and a stylish black houndstooth-patterned blazer. She holds a white cane in one hand and has her other hand on her hip, radiating strength and self-assurance. | | Picture description: A woman with short blond hair is smiling warmly while sitting on a dark brown leather couch. She is wearing a vibrant red and green patterned dress with puffy sleeves and a bold red necklace. One hand is gently resting on her chin. | | |
“Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain!” – Anonymous
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Word play is the name. Scramble is the game.
enummiotua sesaesid
Unscramble the words above.
Your hint is below.
Women are more at risk for this disorder than men. The condition is
known to cause inflammation in the eyes and damage to the retina, optic nerve, and other structures, leading to vision loss. Examples: lupus, hyper thyroiditis, and Sjogren’s syndrome.
| | | | Lights, Camera, Advocacy! | | Picture Description: A poised woman with long wavy hair is smiling while seated against a plain light background. She is wearing a navy blazer over a red and blue floral blouse. | |
Have you ever met someone whose spirit shines with gentleness and authenticity, whose soul you know runs deep? Someone who, despite the weight of life's struggles, compounded by vision loss, has chosen to step forward with a resolute purpose? Someone who embraces every challenge with grace and a willingness to grow and give?
Meet Leslie Nwankwo, mother of four, ASPECT Cohort 9 graduate, and fierce advocate for the visually impaired and blind community. Born with Retinitis Pigmentosa (RP), Leslie was discouraged from pursuing her dreams but said yes to purpose anyway. She is passionate about empowering others to fulfill their God-given purpose. Unapologetically, she shares that her faith in Christ is her anchor, compass and source of courage and strength.
| | Leslie is a brilliant mind with quiet strength. Despite emotional and physical challenges spurred by decreasing vision loss, she chose purpose over regret, earning a doctoral degree in nursing. After painfully stepping away from hands on clinical care due to vision loss, she chose purpose despite pain and pivoted to leadership and education. Today, she serves as an RN educator for the State of Texas and an adjunct professor at the University of St. Thomas, Texas, empowering the blind and visually impaired community through health education. | | |
Recently Leslie shared her story with the Food and Drug Administration (FDA) in hopes of securing approval for a viable treatment option for RP. She visited Capitol Hill with the Association for Research in Vision and Ophthalmology (ARVO) to advocate for continued funding for vision research and maintaining the National Eye Institute as its own separate dedicated arm under the National Institutes of Health. She shared her story at the Prevent Blindness Texas Annual Dark Dining Fundraising Gala. She also participated in the Vision Loss Alliance NJ Self Advocacy Program. On May 14, Leslie will be a guest panelist at the Prevent Blindness Focus on Eye Health Summit: Perspectives in Vision.
We honor Leslie, for her fierce advocacy and the lives impacted by her commitment to choose purpose despite adversity. Her journey reminds us that we can’t wait for when life isn’t hard to be happy. We just need to find the courage and support to embrace what’s in front of us.
Want to network with Leslie? Awesome! Please email her at info.carebasics.llc@gmail.com
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Join the celebration by nominating an ASPECT alumni today!
Do you know someone in the low vision and blind community who is a fierce advocate, creating positive change at the local, state, or national level? If so, it’s time we recognize them. Please click the button below to nominate someone, or even yourself. Let’s celebrate our community of advocates!
| “There is no greater agony than bearing an untold story inside you." – Maya Angelou | | | This is our monthly meetup where we’re Embracing Yearlong Experiences through the Community Advocacy Network. Everyone’s invited to Zoom in for this energizing “superpower hour” that inspires, empowers, and leaves no one the same. We’ll spotlight challenge winners, give shoutouts to participants, and recognize businesses that support our vendors. Come connect, grow, and see just how much EYECAN and we can do! More information and Zoom details below. | | Without further ado, it’s time to meet Kim Owens, our New Beginnings Challenge Champion, Prevent Blindness ASPECT program graduate, blindness advocate, certified braille transcriber, parent mentor, and blogger behind Navigating Blindness. Kim uses her voice and experience to empower others. Her passion for advocacy fuels her mission to guide individuals through their own new beginnings, proving that every challenge is a chance to rise! | | |
Follow Kim’s journey as she advocates to help others discover their new beginning while navigating blindness.
Visit her Instagram page!
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Your go-to series for the latest and greatest in tech for the blind! Hosted by the dynamic Julie Moses, aka “Julie Mo” & “Brenly’s Mom.” As an Assistive Technology Instructor at Vision Rehabilitation Services of Georgia, Julie Mo is passionate about breaking barriers and boosting independence through innovation. This month, she talks about Be My Eyes.
Listen to Julie Mo’s overview of the app.
| | Prevent Blindness Podcast | | |
Have you heard about Chris Hord? He’s the dynamic host and voice behind the Prevent Blindness podcast! With a powerful mix of expertise and lived experience, Chris brings insight, heart, and authenticity to every episode, making him the perfect guide to lead and amplify the voices of visionaries in the blind and visually impaired community and beyond. Don’t miss out! Listen to the latest episode and hit subscribe to stay inspired! Listen here.
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Lumata Health has been helping payers and health systems manage chronic eye diseases since 2017, including national insurance payers and several of the largest tribal health systems in the country. Learn more.
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VLANJ “STRIVE” (Strength Through Relationships, Insights, Values, Education) Friends & Family Support Group is a virtual program offered by Vision Loss Alliance of NJ on the 2nd Wednesday of each month at 7pm ET. The “STRIVE” Program provides education on topics surrounding eye health, physical and mental health wellness, self-advocacy, and support for individuals with vision loss and their families. Register here.
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Eye2Eye Peer Support Program for Vision Loss is a free, phone-based, peer support program, designed to assist adults who are blind or visually impaired and their families. Learn more.
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Prevent Blindness provides eye health and safety fact sheets and videos on a variety of topics and conditions. Learn more.
| | On the horizon, greatness is risin’! | |
Don't miss out on upcoming events at Prevent Blindness. Learn more.
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Get Involved
The Johns Hopkins Disability Health Research Center is seeking participants for a research study to improve the experience and accessibility of making healthcare appointments online.
You may be eligible if you have one or more disabilities or chronic illnesses and are 18 years or older. Interviews will be conducted virtually, and you will be compensated for your time.
If you are interested, complete our short screening survey.
For questions, email tbernst4@jh.edu.
The Principal Investigators for this project are Drs. Theodore J. Iwashyna and Bonnielin Swenor. The Johns Hopkins Medicine Institutional Review Board has approved this project under IRB#00463432 and this research is supported by the National Eye Institute. Participation is voluntary.
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Extra, extra read all about it!
We’re calling all storytellers and there’s no doubt about it!
The time is now to share your story! Reach out to any member of the ASPECT Team for upcoming opportunities to be heard and seen. Remember, your eye story matters!
Julie Grutzmacher: jgrutzmacher@preventblindness.org
Liz Edwards: eedwards@preventblindness.org
Jeanetta Price: jprice@preventblindness.org
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Celebrating National Poetry Month
Roses are red violets are blue
I want you to know that I'm here for you
When things get dark, and you no longer can see
I am here to guide thee
When the moments of fear arise
Open your eyes, I am here by your side
To guide and support, however I can
So please, take my hand
(Select all that apply)
A. Healthcare Provider
B. Caretaker
C. Family/Friends
D. The ASPECT Family
E. All the above
You’re right! The answer is E for EYECAN share my story and raise awareness that losing sight is not the end but a new beginning.
| | | The ASPECT program is generously supported by Amgen, Genentech, Novartis, Astellas, Kyowa Kirin, Mallinckrodt, Regeneron, Alexion, Apellis, Alkeus, Biotechnology Innovation Organization, Johnson & Johnson, and Nanoscope Therapeutics. | | Support the Sight-Saving Work of Prevent Blindness | | | | |
