Hope in Focus Ambassadors

Hope in Focus 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 Hope in Focus 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 Courtney Coates at courtney@hopeinfocus.org.

Ashlyn Lincoln

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

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 Hope in Focus’ Family Connections program, which connects people within the LCA community to share information and provide support.

Tami and her husband, Mike, represented Hope in Focus at the Foundation Fighting Blindness VISIONS 2018 conference and served as panelists at LCA Family Conferences.

Scott Soady

Scott Soady lives in San Diego, Calif., with his wife, Heather, and daughters Gillian and Juliet. Juliet has LCA7 caused by a mutation in her CRX gene.

Scott has represented Hope in Focus at conferences and Global Genes RARE Patient Advocacy Summits and participates in the Family Connections program.

“It is always rewarding to talk to families that are newly diagnosed,” Scott said.

Kristen Steele

Kristen Steele is a 23-year-old from Iowa. Doctors diagnosed her with Leber congenital amaurosis as an infant, with a clinical diagnosis of LCA10-CEP290 confirmed in middle school.

After becoming a certified massage therapist, she challenged the Federation of State Massage Therapy Boards to provide the exam in braille and won.

She now mentors visually impaired individuals pursuing massage therapy careers.

Laura Steinbusch

Laura Steinbusch created a multilingual children’s songbook called Lux+Louise to help blind children learn music through braille.

Her son Enzo was genetically diagnosed with LCA10-CEP290 and lives with his family in the Netherlands.

The book combines braille, print, and tactile illustrations to help children connect music with the real world.