Meet Jennifer Coughlin, New NR2f1 Foundation Board President

Jennifer Coughlin has been appointed the new President of the Board of Directors of the NR2F1 Foundation. Carlie Monnier, who has held the position since the beginning, is taking over the role of vice-president. To introduce Jennifer to the BBSOAS family and community, here is Jennifer in her own words.

Jennifer’s Story

I’d like to introduce myself. I am Jennifer Coughlin, and newly appointed President of the NR2F1 Foundation! I live in London, England with my husband Tim and 2 daughters. I have spent my career at UBS Investment Bank working in both New York and London. I worked in HR and Business Management roles before leaving in 2022 to take care of my daughter full time.

Jennifer CoughlinMy youngest daughter, Edith is 3 and has BBSOAS. Very quickly after Edith was born, it became evident things weren’t the same as they were with our eldest daughter Alice. By 5 weeks old we were seeing the paediatrian, then the physiotherapist, then the opthomologist, the ENT, the feeding specialist and so on. She was missing, or not even making milestones and at 5 months the paediatrician said the terrifying words that its time to see a neurologist.

In an effort to pretend everything was ok, when we weren’t at hospital appointments we were going to baby classes, and it just felt like we didn’t fit in. I dreaded the question from other parents of ‘how old is she’ as they looked on quizzically comparing to their own child. March 31st, 2022, 2 years and 4 days ago, Tim and I received Edith’s diagnosis.

We went into the neurologist’s office with our hope for the future of what family life looked like, and came out to what felt like a shattered crystal ball. Of course our neurologist said, ‘I’ve never heard of this condition before – but here’s a website.’ We were told there is no treatment, we were just told we need to get her started as best we can in therapies and treat the symptoms as they occur, was the message that day. Over the course of the next few weeks and months and the tidal wave of referrals that followed so much changed for us as a family.

I didn’t know you could grieve without losing someone. But those weeks and months, and honestly still some days now, we grieved the life Edith wasn’t going to have. When we got home from the neurology appointment, we immediately googled a tongue twister of a name, one that now is part of our family vocabulary – nr2f1 and BBSOAS, or as Alice says, ‘the foundation’.

Coughlin family

We found the NR2F1 Foundation! A big piece of luck in all this – we discovered the 2022 conference was 7 days later. Tim and I sat and watched the 2022 conference virtually. It started about 2pm in the UK and we sat in our basement on beanbags streaming it on our tv! By 4pm we were so overwhelmed and blown away that we opened a bottle of wine!

We couldn’t believe we’d found this group. A group trying to make a difference and a group that is a community, a collection of people that ‘get it’. We felt a responsibility to reach out and see how we could get involved, and that ultimately led to Tim and his best friend running the Chicago marathon in Sept 2022 on behalf of the foundation. By Tim fundraising for the marathon, it served as opportunity to share openly with our friends, family and colleagues the journey we were going through. Overwhelmed at the support led us to join the board.

At the same time as all of this, we decided it wasn’t sustainable for us both to work while wanting to give Edith all the support she needs so I left my job of 14 years at a bank. I didn’t expect and it wasn’t my intention to get involved quite so much with the foundation. Over the course of a few months it became my habit to sit at my desk whenever Edith napped and after I put the girls to bed, and somehow I found myself stepping into Stephanie’s role as VP. Roll forward 2+  years and I do not know how I am now being given the hat of President.

I admire Carlie, I could not have done what she and the amazing group of co-founders did. To have the confidence, believe and ambition to get this of the ground is awe inspiring to me. I don’t take this role lightly, its feels like a responsibility to represent all of you, our community and families.

Her Promise

I promise to you all to work tirelessly and relentlessly to help find answers for our children. I believe the only way to find answers is to support research, and of course research costs money, like Melissa and Tim and Jen explained at this years conference. So yes, you will hear me ask you to consider what you could do to use your networks to support that, but you will also hear and see me in the regular monthly support group sessions. I’m there for 2 reasons – as a parent and a board member.

This is a journey none of us expected, or honestly wanted to find ourselves in. But I am very grateful to each and everyone of you for being part of it, and giving me as a mum a support network, and for giving me as a mum desperate to find answers and improve my child’s future, a way to focus my energies. But please do reach out. It can be lonely for us as board members if we don’t hear from you, so reach out – reach out to just say hi and introduce yourself, or to tell us what we could do differently – or if you think we are doing something well. Remember, I’m just a mum, and the majority of the board are just parents trying to do our best.

Thank you for supporting the NR2F1 Foundation to live our mission, to empower families and individuals living with rare nr2f1 gene variants through education, advocacy and research.

President NR2F1 Foundation at NR2F1 Foundation

Jennifer lives with her husband Tim and daughters in London, UK, and has a BA in Business Management from Oxford Brookes University, UK. Before recently deciding to stay at home with Edith, Jennifer spent 14 years working at UBS as a Business Manager, in both New York and London.

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