FOXG1 Syndrome – Pathway to a Cure

2017-Nov-28

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BY OLIVER ROLL · CHIEF COMMUNICATIONS OFFICER · UNITED STATES

Starting a new job is always a time of change. It was no different for me when I joined Cisco last December. But I wasn’t prepared for another huge shift that came into my life just three days into the job. My youngest daughter Amara was diagnosed with a severe neurological condition called FOXG1 Syndrome, which means, unless we find a cure she may not be able to walk, talk or think past a five year old.

Oliver with his oldest daughter Soraya and Amara at the beach in San Diego this summer.

Let me back up to a few months earlier. My wife Nasha and I were on vacation in Hawaii with our three small children. Amara, then just seven months old, started an unusual movement of both her arms—much like a reflex—four to five times in succession. It seemed harmless, but distinct enough that it caught our attention. We noticed that it repeated every couple of hours throughout the evening.

While our kids slept we jumped online to look for clues as to what it could be. I will never forget the intensity of worry and helplessness that flowed through me when we first read about a seizure disorder called West’s Syndrome, characterized by infantile spasms. It’s a condition that only affects infants and in most cases means your child will have severe developmental disabilities and medical issues.

Neither of us knew that the lives of our whole family were about to change forever.

After a trip to the emergency room, an EEG confirmed that Amara was indeed having infantile spasms. We flew back to California immediately, and Amara spent a week at Stanford Hospital on steroid treatment, and under-going countless tests. This stopped the spasms, and her first genetic panel test came back negative. A few weeks later, after more and more tests, we were told that she was one of the lucky few and would likely develop normally.

A huge weight lifted from our shoulders. We felt so extraordinarily fortunate.

Unfortunately our feeling of relief didn’t last long. On my third day at Cisco our genetic counselor called us in and told us that Amara had tested positive for an extremely severe and rare neurological condition called FOXG1 Syndrome. Neither of us had ever heard of it, and we were told there is no known cure—yet.

We all have the FOXG1 gene, but Amara’s version of the gene was misspelt when her DNA was written. Without a cure Amara will likely never talk, and if she ever walks it will be with difficulty. The most severely affected kids with FOXG1 Syndrome are in wheelchairs, they suffer seizures daily, eat from feeding tubes, and in most cases do not live past their 20s.

Oliver with his three children on his birthday last year. Amara was 6 months old.

Oliver with his three children on his birthday last year. Amara was 6 months old.

A Plan Is Born

It’s hard to put into words the experience of having your baby girl—a being you would lay down your life for—get such a diagnosis. The range and intensity of emotions is beyond description—numbness, anxiety, compassion, hope, fear and of course profound grief.

Processing all these emotions while moving at Cisco speed in my new job was a whole new kind of demanding. I love the work I do and feel so fortunate to be here, and at the same time my family is everything. I’m still learning how to effectively manage demands at work versus demands at home

Despite the emotional free fall we were determined. Nasha has been an amazing driving force. She threw herself into researching FOXG1, drawing on her business background to develop a roadmap to a solution. She spoke to parents, specialists, and scientists until a strategy began to emerge.

She discovered a cure is possible. And it could unlock the cure to other disorders such as autism, schizophrenia, brain tumors and more. We live in a remarkable time where biotech methods such as genome editing are no longer the stuff of science fiction.

My wife cofounded the FOXG1 Research Group who are focused on finding a cure by funding the most promising research with prominent scientists in brain-related disorders.

While Nasha built the foundation, I got to work too. I found so many ways Cisco was there to help, including Cisco’s matching program which the FOXG1 Research Group is now a part of. We created a Brightfunds page so others could donate and help us reach our next milestone of $1 million to fund the research needed as the first step towards clinical trials and approved gene therapies.

Amara at 1 years of age.

Amara at 1 years of age.

Pathway to a Cure

Our goal is to get to clinical trials of gene therapies within the next two to three years. A cure is within our reach.

The support we’ve received from friends and colleagues at Cisco has been amazing. I’ve received so many supportive, caring and touching notes, and thanks to everyone’s generous contributions so far, we’ve already been able to fund our first scientist.

And Amara? Every day I am grateful for the progress she’s making. She’s now 21 months old, though her mental age has not kept up. Her seizures have not returned, she eats without a feeding tube, she’s starting to move and most importantly she’s a happy baby with the most glorious smile. We are determined to find a cure, and in doing so we hope we can help change the lives for thousands of families and kids suffering from FOXG1 Syndrome and other brain-related disorders.

Oliver and his family earlier this year.

Oliver and his family earlier this year.

Thanks for reading our story. We hope you will consider supporting us (see below) and help spread the word. A cure is within our reach!

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