From CEO Laura Szutowicz, HAE UK: 

The run-up to hae day :-) is always fun, with us trying each year to find something that will be new and challenging for our members. This year we started with a quiz on Saturday night. Rachel is our indefatigable question setter and yet again came up with many brain teasers. The Easton family won the family group, June and Peter Cole the pairs, and Furkhanda won as an individual. As always, the feedback was “another one soon!” but it is hard work for Rachel, so we may have to look at making the winners of one set the questions for the next to give her a chance to join in!

Rachel also set a “Scavenger Hunt” where people had to find various items ranging from “a leaf bigger than your hand” to “something to recycle”. We are still waiting for them all to come in to announce the winners.

Our big project for hae day :-) was to produce a collage of members photos showing them doing something they enjoyed – the result is stunning! It does just show that having HAE doesn’t mean you cannot live your life.

Rachel manages our social media content and also posted every day in the week before hae day :-) with motivational and inspirational quotes, which all helps to lift our mood. And then this culminated in our great treat. Following up on an idea of June Cole’s, I was able to make contact with “Mr. Motivator”. He is an exercise coach famous for his exuberant style, both in his clothing and in how he really does get people moving! We are so lucky that he has invited HAE UK to join in his Wednesday evening session, so look out for the reports in the next Global Perspectives.

That ties in nicely with a clinical study HAE UK has sponsored with the Immunology Center nurses from Cardiff. Twenty HAE patients have been recruited into this study, whereby they are issued with Fitbits and generally encouraged to raise their level of activity and fitness to see how this affects their HAE. Hopefully, the first results will be available fairly soon, but Emily Carne, who is the lead nurse, reports great enthusiasm from the participants. Depending on the interim results, we will see if the study should be extended to some other centers and more patients.

Another study HAE UK is assisting with is being carried out by the Psychology Department of Staffordshire University and Dr. Lavanya Diwaker, who is both a consultant immunologist and a health economist. The study was developed from an idea of Dr. Diwaker’s to look into the lived experience of HAE and will be both qualitative, but more importantly, quantitative. We are still in the early days of developing the protocol for this study, but it is wonderful to have such enthusiasm from this very highly qualified team.

One of our members, Peter, who has two daughters with HAE, set himself a challenge of running four miles every four hours for 48 hours in aid of HAE UK! In doing this, he raised an amazing amount of money, as well as awareness of HAE in his local community. Peter’s employers, Innospec, also more than doubled his fundraising by using us as their nominated charity. Thank you so much, Peter and Innospec!

Furkhanda again raised a large sum of money on her Kiltwalk! She also raised not a few blisters on her feet as she walked the equivalent of a half marathon and sent some gorgeous photos of the wonderful scenery in Scotland. We also have the wonderful Lucy Church, who is going to do a parachute jump in aid of HAE UK, very brave of her and much appreciated.

Finally, HAE UK has turned shopkeepers! We have had so much demand for the Percy the Pufferfish hoodies we awarded as prizes to the winners of our Christmas competitions that we have added a “shop” to our website. On this you can buy Percy sweatshirts, hoodies and T-shirts, also the branded supporter T-shirts, hoodies etc. in a variety of colors, all printed on good quality garments.