#togetherapart: Meet Ally

With the #TogetherApart initiative we have collected fun photos, videos, boomerangs and stories from you of your social distancing days and more – so we can all be #TogetherApart.

Hi – I’m Ally

I’m 22 years old

I’m a Sibling of a HAE patient

And I live in United States

I hope that HAE patients in the future:
have access to any and every medication they need to live their lives to the fullest.

The HAEi Youngsters’ Community is important because:
it brings together people from all over the world into one big happy HAE family that is full of love and support.

My favorite quote is:
"If you cannot do great things, do small things in a great way" Napoleon Hill

‘Creating a Path to Better Health’ means:
Creating a Path to Better Health means always working towards a better future for patients to walk into.

This is my personal story:
My brother Jack was diagnosed with HAE at age four in 2010 and by 2014 my family had created Team Jack. We advocate by hosting and participating in events and local fundraisers for HAE. When I was 16 I appeared on a special "Teen Tournament" edition of the Food Network show "Chopped". As someone who had dreamt of being a chef since she was a little girl, this was a life changing dream come true. The winner of this tournament would receive a cash prize, but that was just icing on the cake for me. I knew immediately what I would do with the money if I won. I wanted to put half aside for my culinary arts education but more importantly, I wanted to donate money to the Hereditary Angioedema Association. Although I did not win, I was able to speak on a national platform about HAE. My local newspaper wrote an article about me, my county's Board of Freeholders presented me with an award, and my high school advertised the episode. This sparked interest and curiosity as people began to ask me about Jack and about HAE in general. I ended up making a presentation about HAE and presenting it to my entire high school. As I grew older and met patients, doctors, caregivers, and other health professionals in the HAE world I became more and more interested in not only the advocacy but also the medical side of HAE. I did pursue my dream of completing culinary school and working in that field. I even worked at Disney! However, I felt unfulfilled and knew I needed a change of direction. While I still bake and cook as a hobby, I'm currently back in school working towards my RN and a Bachelor's of Health Sciences degree. Thanks to the HAE community I've made countless friends that I love and speak to every day. I look forward to every Capital Hill Day, Patient Summit, and 5K my family and I attend. I'm endlessly thankful for the relationships I've built over the years and the opportunities to extend my HAE family. I hope we all get to be together again soon.

#togetherapart – meet us …