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Working for Wolfram Syndrome

556. Paul Lynch
555. Tracy Lynch

Paul and Tracy Lynch, founded the charity Wolfram Syndrome UK after their daughter, Jennifer, was diagnosed with the condition when she was 8 years old.

Wolfram Syndrome affects 1 in 500,000 children and can cause diabetes, visual impairment, deafness and neurological problems. Paul and Tracy work tirelessly to raise awareness of this incredibly rare condition among the medical community in order to achieve faster diagnoses. Wolfram Syndrome UK is funding research into a drug which will hopefully slow down and eventually halt the syndrome’s progression.

Prime Minister David Cameron said:

“Since Jennifer’s diagnosis, Paul and Tracy have taken phenomenal steps to raise awareness and find a cure for Wolfram Syndrome. Their work is having an impact in the medical community and has the potential to transform the lives of those living with this rare condition. I’m pleased to name Paul and Tracy the 555th and 556th UK Points of Light.”

Paul and Tracy said:

“Paul & I were absolutely thrilled to be told that we have been awarded the Prime Minister’s Points of Light Award. Since we started Wolfram Syndrome UK, 6 years ago, we have come a long way, first as a support group & now as a registered charity, just weeks after our daughter was diagnosed with this rare condition. We have met many remarkable families & individuals, many who are now good friends, who also volunteer their time to help with fundraising & raising awareness for this rare condition.  To know that we are helping others with our group as well as our daughter is a great feeling & knowing that what we are doing is appreciated by those we meet & work with is very humbling. We would also like to thank the strong team we have within WSUK that keep us moving forward. Special thanks to Alan Nye, Darren Lynch and Michael Chandler for their endless help and time they dedicate to this charity.”

Tracy and Paul’s local MP, Sir Peter Bottomley MP said:

“Paul and Tracy have built a charity in Worthing that is supporting people across the country living with this rare condition. I’m delighted that their achievements are being recognised by the Prime Minister with this Point of Light award.”



The daily Points of Light award recognises outstanding individual volunteers - people who are making a change in their community.

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