Sofia Sees Hope Ambassadors are a network of passionate supporters who enhance our mission in their communities across the globe. Our Ambassadors give encouragement to Leber congenital amaurosis (LCA) patients and caregivers, they attend conferences, keep up with research, and share their stories and experiences to help others. They represent Sofia Sees Hope in Mexico, Canada, the Netherlands and across the United States.
If you are interested in contacting an Ambassador or learning more about our program, please contact Ashley Luppold, program manager, firstname.lastname@example.org.
Meet the Ambassadors
Living in a suburb of Nashville, Tenn., Ashlyn Lincoln and her husband, Axel, are parents to 6-year-old Gunner, who was born without vision, and 8-year-old Ace, who is sighted. Doctors diagnosed Gunner at 6 months with LCA10 caused by a mutation in his CEP290 gene.
“It seems just yesterday my journey began as having a child with a visual impairment,” she says. “I was overwhelmed, exhausted, emotional, determined and lost. All at once.”
At the first event she ever attended for families living with vision loss, she received love, support and a helping hand. They helped entertain Ace while she tended to an overwhelmed and overstimulated Gunner. They passed on books and games and toys and gave her information for more resources.
“Let me be that support for you today,” she tells families. “Please, take it all! I am passing it on with love, just as it was passed onto me.”
Jack McCormick of Ontario, Canada, graduated from Wilfrid Laurier University in Waterloo, Ontario, in 2018. Diagnosed with LCA2 due to a mutation in his RPE65 gene, Jack is a passionate advocate for inclusion and accessibility on all fronts. He initially tried to hide his blindness but that all ended when he got Jake, his beloved guide dog. Jake immediately made Jack feel like he was wearing a sticker that said, “Hey, I can’t see,” which led to acceptance. Acceptance led to respect and opening pathways to social accessibility, that, in turn, helps fuel research.
As an Ambassador, Jack tells his story in every “Seeing Hope” newsletter, covering topics ranging from technology to help the visually impaired to navigating the pandemic.
Angélica Bretón Morán
Angélica Bretón Morán is a 24-year-old from Mexico. She has Leber congenital amaurosis (LCA) with a mutation in her RPGRIP1 gene.
Her philosophy is, “You have to be aware of the limitations, but you also have to find a way around the obstacles, or pass through them, or use them as a catapult, or see them as a feature that makes us unique and special as people, as we all are.”
A musician by training, Angélica supports young people with visual impairment who study at the Faculty of Music (FAMUS) of the UANL in Mexico. She also founded a Facebook support group for LCA patients and family who have the RPGRIP1 mutation.
Tami and Mike Morehouse
Tami Morehouse made research history when at age 44, she participated in a clinical trial for gene therapy for LCA2 (RPE65). Ultimately, Spark Therapeutics developed the drug that was marketed as LUXTURNA® following Federal Drug Administration approval in December 2017.
Tami volunteers in Sofia Sees Hope’s Family Connections program, which connects people within the LCA community to share information and provide support.
Tami and her husband, Mike, who also is an Ambassador, represented SSH at the Foundation Fighting Blindness VISIONS 2018 conference in San Diego. She served as a panelist at our LCA Family Conferences in 2018 in Mystic, Conn., and 2019 in Philadelphia and privately talked with LCA patients and their families about frustrations with a lack of diagnosis, daily living, fears surrounding clinical trials and her experiences with them.
Scott Soady lives in San Diego, Calif., with his wife, Heather, and daughters Gillian, 8, and Juliet, 5. Juliet has LCA7, caused by a mutation in her CRX gene. While LCA is a rare disease, LCA7 is even more rare.
Being on the West Coast, Scott has attended conferences there on behalf of Sofia Sees Hope, which is headquartered on the East Coast. He represented our organization at two Global Genes RARE Patient Advocacy Summits in California.
Scott also participates in our Family Connections programs.
“It is always rewarding to talk to families that are newly diagnosed,” Scott said. “I will be forever grateful to have gotten support from Sofia Sees Hope and others when Juliet was first diagnosed.”
Kristen Steele is a 23-year-old from Iowa who forges through life with passionate determination. She finds the support she needs to be her best and passes her knowledge along so others can be their best.
Doctors diagnosed Kristen with Leber congenital amaurosis as an infant, although her clinical diagnosis of LCA-CEP290, also known as LCA10, came in middle school.
After completing a program to become a certified massage therapist, she took on the Federation of State Massage Therapy Boards because it would not administer the test in braille. She won her suit against the agency, and took the certification exam in braille.
“I wanted to create this advocacy for anyone else pursuing massage therapy and let the boards know it should be in Braille,” she said. Today, she mentors other visually impaired people who want to become massage therapists.
Building on her son’s love of music, singing, moving, and reading, Laura Steinbusch created a multilingual children’s songbook called Lux+Louise to help youngsters learn music by braille.
Enzo was born in 2014 in Lausanne, Switzerland, and was genetically diagnosed at 18 months with LCA10-CEP290, a form of Leber congenital amaurosis causing severe retinal dystrophy because of mutations in the CEP290 gene. Enzo lives in The Netherlands with his mom and his dad, Merlijn, and his new little sister, Maud.
The music book contains five popular children’s songs with printing in black and in braille and six visual and tactile illustrations with explanations and questions. “This makes it easier for blind children to connect the song texts to the tactile illustrations and the real world,” Laura said.