“My Greatest Achievement Has Been Overcoming My Own Shyness to Advocate My Disabled Child” – Judith Sheppard
Welcome to The Short Read, our weekly peek behind the curtain at the people who make this amazing community tick. Make sure to check back every Tuesday for the latest installment.
Judith Sheppard is the parent of a 22-year-old young man with FOXG1 Syndrome. She is the Chair of FOXG1 UK and has previously worked in the National Health Service in London as a research technician. She formed the FOXG1 UK charity with other UK families. FOXG1 UK provides support and information to families and carers who have a child diagnosed with FOXG1 Syndrome. They work with other UK and International organisations to promote research and improved care for people suffering from FOXG1 Syndrome.
What are you working on right now?
FOXG1 UK is working with other families around the world to raise funds to research FOXG1 Syndrome. With the wonders of modern technology families from as far flung as USA, Brazil, Australia, UK and across Europe held their first Skype meeting this month. We have a scientific advisory board who have reviewed a number of research proposals for us. Scientists are interested in researching FOXG1 not only as a treatment for a rare syndrome but also as an important transcription factor which has an impact in other developmental disorders and some cancers.
What’s the biggest challenge you face in your work at the moment?
Our biggest challenge will be raising enough money to fund the work necessary to bring about a cure or life-changing treatment for FOXG1 Syndrome. Then to get that treatment approved by the authorities and into the marketplace.
Name one big development that you would like to see in your field in the next 18 months.
I have seen rapid advances in the field of genomics during my son’s lifetime. It would be fantastic to see that rapid progress translated into a life changing treatment which will bring relief to patients and their families as quickly as possible.
What are you most proud of in your career?
My greatest achievement has been overcoming my own shyness to advocate my disabled child. This journey to diagnosis has required persistence and determination. I am proud of the person my son is, his small but significant achievements and despite his difficulties, his amazingly cheerful disposition.
Which scientists, living, dead, or fictional, would you invite to dinner, and why?
I would love to talk with Oliver Sachs about my son’s syndrome. I would like to know what he thinks about the advances in genomics and the impact that it is having on what we know about the brain and neurology.
What advice do you wish someone had given to you at the start of your career?
As the parent of a disabled adult – I wish I had been told when he was a child never to give up hope, be patient and the answers to my questions would come in the fullness of time. I found hope in a diagnosis for my son’s condition and I am hanging onto that hope for him and others like him.
Registration for the 2018 Festival is free; secure your Festival Pass here to ensure you can hear from Judith and all of our speakers.
Opinions and views expressed in The Short Read are the interviewee’s and not those of the home institution
Why not check out The Short Read archives?