I spent my career in equity analysis and made some very dear friends along the way, most recently at Janus Henderson Investors. When doctors began warning us that Maxwell was not well, I left my career in a frazzled, frantic state. I tried to be strong the day I resigned from Janus, but I simply couldn’t hold it together. I burst into tears in front of my team leader and HR representative, barely able to form the necessary words. I was finally able to communicate that my son has a medical emergency and that I needed to leave immediately. Everyone was empathetic, concerned and wanted to help. I tried to complete a final walk through to say formal goodbyes, but I was too upset to say all that I wanted to say. I sent an informal goodbye to the group e-mail list and slowly reached back out as regained my composure.
Lisa Neison and Rich Carney are two dear friends from Janus Henderson, and some of the most authentic people I know.
They were among the first friends to learn I was having twins, and Lisa even held a baby shower for me at Janus! After the twins were born, Lisa and Rich always asked for updates and wanted to see pictures, and Lisa spent many work lunches helping us with feeding time. When Maxwell was diagnosed, Lisa and Rich were both huge sources of support, understanding and grieving beside me, but also cheering me on as I chased scientists all over the world.
They told me to be fearless and relentless, and I listened wholeheartedly and made sure to keep them updated.
Janus Henderson holds an annual charity challenge, for a $75,000 grand prize, in a Shark Tank format where you have 10 minutes to pitch your chosen charity. Lisa and Rich championed SLC6A1 Connect and we put together an all-star pitch. One of Maxwell’s many guardian angels, Dr. Larson from Children’s Hospital of Colorado, even came to speak! Dr. Larson diagnosed Maxwell and has been a huge advocate for him and the rare disease community. We practiced many times together and I privately practiced on my mostly indifferent cat at least 100 times. When the day of the pitch finally arrived, I was both nervous and excited. Many of my former Janus colleagues came to cheer me on, and seeing their familiar faces in the audience was comforting. The 10 minutes went by in such a flash, I barely remember the actual pitch. The “twinado” made their grand appearance for the final minute and stole everyone’s hearts. Maxwell was dressed as smart as Prince George (but looked even cuter!), and Riley was a fashion princess in her sunflower sundress. Needless to say, their appearance helped to seal the deal. But then the wait began…
The competition was held among multiple international Janus Henderson locations, and due to the time difference, the winner wasn’t announced until the following day. I couldn’t attend the presentation as I was on a flight to attend a conference at the National Institute of Health, but I compulsively checked my phone for updates during the long flight. Then, as we were about to land, I accepted a Facetime from Lisa and Rich who were calling to tell me we won the charity challenge!
I was screaming and ugly crying as we landed, and in retrospect I was probably lucky an air marshal didn’t apprehend me for making a scene.
The $80,000 prize gets us to a total of $500,000 toward our goal of $1,000,000. We’re halfway there! We are halfway to our first goal of developing a gene therapy to help every child affected with SLC6A1.
Thank you to Lisa, Rich and Janus Henderson Investors for believing in SLC6A1 Connect.
Kam Bassi · June 7, 2019 at 8:26 pm
What can I say. Utterly amazing. We are going to get there. We are all going to get there together. STRONG
Harriet. Renner · June 8, 2019 at 6:54 pm
Amber, you continue to amaze me! Congratulations for ALL you have accomplished, I am so proud of you. Much love, Harriet