Willow News - April edition

It’s lovely to see the days finally getting lighter, so we’re sharing some outdoor events that you might like to join. But first, let’s take a look at how our medical advisors have been working hard to raise awareness of what we do.?

Raising awareness of Willow’s work?

As part of our work supporting seriously ill young adults aged 16 to 40, we have been actively reaching out to young people living with rare diseases. Support networks for these groups and services that specifically focus on quality of life are equally rare, and this is where Willow gives vital hope and relief to families.??

Our medical advisors work closely with medical professionals and organisations all over the UK to spread the word about our work. They recently attended a Rare Disease Day event at Guy’s and St Thomas’ in London for those involved in caring for patients living with rare diseases. It was a great opportunity to mark Rare Disease Day, raise awareness of Willow’s work and broaden our network of referring medical professionals. The day was invaluable; we introduced our services to more than 450 contacts in the medical community and handed out leaflets to encourage them?to refer their patients to us.?

Our medical advisor, Bev, said:

“For young people living with serious illness, every day should be precious. During the past two years we have worked extensively with rare disease professionals and rare disease groups and have had amazing feedback about the services we offer. I have reached out to rare disease organisations, professionals and patient support groups to ensure they all know we offer memory making experiences.”

Shannen’s Special Day

As always, the team has been busy creating memorable and uplifting Special Days. We would like to share some words with you from 26-year-old Shannen from County Durham who is being treated for a very rare form of ovarian cancer.

We arranged a Special Day for Shannen and her sister Katrina at Dino Snores at the Natural History Museum. This unique experience allows adults access to selected galleries, a live animal workshop, stand-up comedy and quizzes together with dinner and an overnight stay in the museum.?

"My diagnosis flipped my life upside down. I used to have a busy social life, I was active and loved my job. Now, every day feels like a struggle and my diagnosis just makes days heavier.

“My Special Day was time for me and my sister to get away from the difficult three years we've had together. We both really enjoyed Dino Snores as it gave us quality time with each other, which we haven't had in such a long time.

“It is something I'll always remember as, in that moment, I didn't think too much about my health and could concentrate on having fun. Thank you all again for this amazing weekend!”

Challenge yourself this summer

We have lots of opportunities for you to get involved with fundraising for our amazing cause. As the days are getting lighter, why not sign up for one of our outdoor events? Our first UK based Willow Trek is taking place along England’s only natural World Heritage Site, the beautiful Jurassic Coast. We also have our popular annual London Ryder Cup and Willow 10K, along with a very exciting new event Catch of the Day with David Seaman where you can spend the weekend fishing with our Honorary President.

Please check out our calendar for a full run down on everything we’re up to. If you’re interested in finding out more do contact us.

We would love to hear from you if you want to help make more Special Days happen. Please contact [email protected] for an informal chat.