Holiday greetings and thanks from the NA Advocacy

To all our supporters, we at the Advocacy wish to express our deepest gratitude for the generosity that you have shown over the years. Your donations are indispensable in supporting efforts to raise awareness about neuroacanthocytosis, advance scientific research for answers to this highly impactful group of rare diseases and assure the sustainability of the charity. 


2019 has been a special year for the Advocacy. Thanks to your donations and the gift of Carl and Betty Pforzheimer, we are able to announce the first winner of the Glenn Irvine Prize as well as move forward with the funding of research for critical VPS13A genetic mutations, the chorein Western Blot service and the NA database.


As scientific research is key to providing improvement and hope in the lives of neuroacanthocytosis patients, next year we plan to continue to provide funding for these and other promising projects and proposals. Needless to say, the costs involved, even considering the past generosity of our donors, are challenging to meet. There are many ways to support us! Please consider the following:


  • Make a Donation during the holiday season or on any day in 2020! Again, your continued support is essential. If you wish to donate, please click the "Donate Now" button on the website.
  • Host an NA Coffee Morning on or around Rare Disease Day 2020 (29 February). Invite friends to enjoy coffee and baked goodies raising money for a wonderful cause. As Rare Disease Day is quickly approaching, we are urgently calling for volunteers to help us make this effort a success. Please send us an email at saying “Yes, I will host a coffee morning”. We will be thrilled and also be happy to advise you on how to make your special morning a successful one!
  • Participate in the Give As You Live charity cashback platform. If you live in the UK, many of your shops will translate into funds being donated to the Advocacy at no cost to you. To begin giving, please visit our charity join page at Give as You Live
  • Organise an NA fundraising event at your school, church or through your social group. There are so many ways to raise money through fun activities such as sports days, bake sales, quiz events and pizza days. Please contact us and we will be happy to provide more ideas. What a wonderful way to allow children and others to share in the rewards of helping others in need.
  • Planning to participate in a Challenge Event in the New Year? If so, please consider sponsoring the Advocacy and raise money as you pedal, walk, run, swim… Go team NAAdvocacy!


Thank you again for touching the living of patients living with this group of rare diseases. We hope that we can count on your continued support. We wish you a very Joyous, Healthy and Prosperous Holiday Season!

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