#YouMadeItHappen – Delilah

This year on #YouMadeItHappen Day we’re celebrating the nystagmus heroes of 2019 who’ve really helped make a difference for the nystagmus community.

Delilah and her family offered the perfect story for our Jeans for Nystagmus Genes Day campaign, helping us raise awareness of nystagmus as a genetic disorder.

Thank you, Delilah

You can read Delilah’s Jeans for Nystagmus Genes story, here.

Roger stands in his garden.

#YouMadeItHappen – Roger

This year on #YouMadeItHappen Day we’re celebrating the nystagmus heroes of 2019 who’ve really helped make a difference for the nystagmus community.

Roger inspired us to write a brand new guide to nystagmus – for adults. He generously shared his own thoughts on the subject to start us off and members of our community chipped in with their own thoughts.

The result? A brand new guide to nystagmus, which will be published in the New Year.

Thank you, Roger

Read Roger’s description of nystagmus here.

Nadine smiles for the camera

#YouMadeItHappen – Nadine

This year on #YouMadeItHappen Day we’re celebrating the nystagmus heroes of 2019 who’ve really helped make a difference for the nystagmus community.

Nadine decided she didn’t want her little daughter to grow up in a world where people didn’t know about nystagmus, so she wrote her book ‘Can I tell you about Nystagmus?’ which explains nystagmus so simply that even a child can understand it.

Thank you, Nadine

You can order your copy of Nadine’s book, here.

Patsy

#YouMadeItHappen – Patsy

This year on #YouMadeItHappen Day we’re celebrating the nystagmus heroes of 2019 who’ve really helped make a difference for the nystagmus community.

Patsy is one of our newest volunteers. It’s thanks to her that we were able to start up our virtual support group for people diagnosed with Acquired Nystagmus.

Living with AN herself, Patsy is well aware of the frustrations of getting a diagnosis and any advice or treatment for the condition. She is championing the cause of AN, asking the researchers all your most searching questions, supporting others and giving them a voice.

Thank you, Patsy

If you or someone you know would like to join our virtual Acquired Nystagmus support group, please contact us today.

#YouMadeItHappen – Bronagh and Susan

  • 365 general enquiries answered
  • information and support line available 24/7
  • 5,000 nystagmus leaflets in clinics and hospitals 
  • 75 families calling on our education advocacy service
  • 3 research projects funded, with a further £30,000 for research in 2019

Bronagh and Susan – you helped make that happen!

Today the whole nystagmus community says thank you to you.

#YouMadeItHappen – James and Thomas

  • 365 general enquiries answered
  • information and support line available 24/7
  • 5,000 nystagmus leaflets in clinics and hospitals 
  • 75 families calling on our education advocacy service
  • 3 research projects funded, with a further £30,000 for research in 2019

James and Thomas – you helped make that happen!

Today the whole nystagmus community says thank you to you.

#YouMadeItHappen – Clare

  • 365 general enquiries answered
  • information and support line available 24/7
  • 5,000 nystagmus leaflets in clinics and hospitals 
  • 75 families calling on our education advocacy service
  • 3 research projects funded, with a further £30,000 for research in 2019

Clare – you helped make that happen!

Today the whole nystagmus community says than you to you.

#YouMadeItHappen – Glen

  • 365 general enquiries answered
  • information and support line available 24/7
  • 5,000 nystagmus leaflets in clinics and hospitals 
  • 75 families calling on our education advocacy service
  • 3 research projects funded, with a further £30,000 for research in 2019

Glen and the whole abseil team – you helped make that happen!

Today the whole nystagmus community says thank you to you.

#YouMadeItHappen – Steph

  • 365 general enquiries answered
  • information and support line available 24/7
  • 5,000 nystagmus leaflets in clinics and hospitals 
  • 75 families calling on our education advocacy service
  • 3 research projects funded, with a further £30,000 for research in 2019

Steph – you helped make that happen!

Today the whole nystagmus community says thank you to you.

#YouMadeItHappen – Harry

  • 365 general enquiries answered
  • information and support line available 24/7
  • 5,000 nystagmus leaflets in clinics and hospitals 
  • 75 families calling on our education advocacy service
  • 3 research projects funded, with a further £30,000 for research in 2019

Harry – you helped make that happen!

Today the whole nystagmus community says thank you to you.