By Carol Colmenares

Growing up, Susan had the best of both worlds: summer in the idyllic mountains by Lake Sunapee at her grandma's house and the rest of the year in the vibrant coastal community of Hampton, NH, in her family's home.  "I was a happy only child." - Her laugh, open and kind, fills every corner of our Zoom call.  Her dad, a school teacher, would take summers to travel with the family. "I was eight years old in a Volkswagen stretched out in the back, and my parents in front - we went cross country twice, then when I was 12, we spent six weeks in Europe". 

Threading the memories of this time, Susan describes herself as a writer with an active imagination but also a bit of a climbing-tree tomboy, digging for worms.  She was also an athlete- a runner who dreamt of going to the Olympics, as well as an excellent student. By high school, Susan had a heartfelt aspiration to join the Peace Corps, but her parents, perhaps concerned for her well-being, steered her away from that path. A high achiever, Susan finished high school in 3 years instead of the typical 4, and by the age of seventeen, she was already on her own.  Marriage also came at a young age, and life could not look any better: a thriving construction family business, a beautiful home, and 2 young children.  "I did all the business part, and he did the concrete and the labor, and the company grew. We became very successful.  By the time I was 25 we had already built our own home, which was like a quarter of a million dollars back then."

Alex, the third child, was welcomed into the family's loving arms, just like the others before, with no indication of any challenge. At around 10 months old, Susan noticed something peculiar in his eye—this glare, like a cat's eye reflex that you see at night.  During a pediatric check for an ear infection, Susan brought it up to the doctor.  "The pediatrician put the light in the eye, and he looked perplexed. He was like… he didn't know what it was."  They immediately went to an ophthalmologist.  Nothing could have prepared them for what they would hear next.   "He [the doctor] had us come into the office and said, I've only seen it in medical books; it's extremely rare, but I believe your son probably has a malignant tumor called retinoblastoma in his right eye."  Retinoblastoma is a cancerous tumor that starts in the retina, and if undetected or untreated, it can continue to spread to the brain, ultimately causing death. In the case of Alex, the only possible treatment was the removal of his right eye. The family traveled to Boston, where they would obtain high-quality medical care.  Dr. David Walton, a pediatric ophthalmologist, was in charge of the procedure.  After an extensive surgery, Susan was informed that her son had a growth in his left eye as well, and although it did not have to be removed, the next two years would be filled with treatment, procedures, and general anesthesia. "That was even scarier than the cancer because your baby had to go under every time." 

It was during this time that Susan began to look for resources for parents who had gone through the same experience. She found The Perkins School for the Blind and volunteered at their conferences, and although she was not one of the founders of The National Association for Parents of the Visually Impaired (NAPVI), she would later become their executive director and board member. Still, there wasn't a group specifically supporting retinoblastoma patients or their families. "I started to network with the doctors, my pediatric ophthalmologist. At the same time my son was being treated in Boston, there was a retina specialist, Dr. Thaddeus Dryja, who had made a huge discovery linking genetics and cancer."  Susan made an appointment. "He thought I wanted to get the genetic test," chuckles Susan. "I went straight to him and said,  I'm here because the families need more information... Is there a way we can get more information for the families?"  The shocked doctor went to the back of his office and came back with a folder containing about 150 handwritten letters from all over the country. "He didn't know what to do with them, and he gave them to me."  That night, Susan went home and wrote back to each family, informing them about a newly created group: The New England Retinoblastoma Network. "And they all responded, the group grew overnight." 

Then came NAPVI, an organization originally initiated by a group of volunteer parents. It had been in operation for some time and was experiencing growth. However, the workload became overwhelming for the volunteers. While not specific to retinoblastoma, Susan found that its mission closely aligned with her own goals of providing support and information to families. They were seeking an executive director, and Perkins had received a grant from the Hilton Foundation, specifically designated to aid parents of visually impaired children. Given her life experience and passion, she applied for the position and was selected.  "I had an office at Perkins for like 25 years, a NAPVI office, and at the time, 90 percent of the funding came from that grant." Susan's business experience came in handy as she expanded the membership, diversified the funding streams, and overall strengthened the organization's financial health. 

In addition, Susan was actively engaged in advocacy efforts in Washington, helping with the reauthorization of IDEA. "I was working with other coalitions strengthening  the law to add Braille, orientation, mobility, and adjust the language for related services for blind and visually impaired."  All these efforts led to her receiving an invitation to the White House under President Clinton to sign the reauthorization of IDEA.

Susan also published a book, A Parent's Guide to Special Education for Children with Visual Impairments (AFB Press, 2007), and another one in partnership with the Glaucoma Foundation for kids with congenital glaucoma.

We asked Susan about the achievements and challenges she faced in her career path, from business owner to dedicated advocate to author.  "In today's society, you're supposed to go a certain way for achievement, and I didn't follow the traditional college path – not like that has stopped me," says Susan with a mischievous twinkle. Susan was accepted into a program at the Radcliffe Institute for Advanced Study at Harvard University, a master's degree level certification. She went through the certification program for business management, drawing from her experiences in both profit and nonprofit sectors. "I was really like a sponge with this nonprofit management, all about the laws, all about how to run a nonprofit and going to seminars, and I completed the program. So that, to me, was a high achievement."

Of the countless families that Susan has helped over the years, Susan emotionally remembers a mother from St. Vincent's and the Grenadines whose daughter was born blind.  She reached out to Susan for guidance. Despite the limited resources and the lack of a strong policy for children with disabilities on the Caribbean island, this mother was relentless in ensuring her child's education. Susan turned to the International Council for the Education of People with Visual Impairment (ICEVI), an international education group, for assistance. "We started setting things in motion, and it started from a parent coming to me." Together, they organized a parent conference, facilitated teacher training, and established connections with the Ministry of Education. The daughter, now a teenager, has flourished in music. Not too long ago, Susan received a video of the girl's recital with a special message - "It was probably like a holiday thing, and the mom said to me:  if it wasn't for you - you know, she was giving me the credit that I gave her hope for her daughter."

We asked Susan what she thought was the spark that ignited this passion to reach families and help others. "It's the pain that you feel as a parent when your child has something wrong with them. It's so deep. It's like you don't understand it unless you actually go through it. And that feeling of shock, grief, anger, anxiety, all those things, no matter what the diagnosis is, it's just that compassion or empathy… it's  understanding that."

Susan is currently the president of the North America/Caribbean Region for the International Council for the Education of People with Visual Impairment (ICEVI).  Her daughter, Christiana, is the president of a non-for-profit that helps students get into college; her second son, Andre, has continued with the family's construction business, and Alex is a compassionate medical doctor.  In her free time, Susan enjoys gardening, writing, taking care of her health, and spending time with her husband of 15 years, who is a retired chef and enjoys cooking for Susan.