Together for PURA

Commemorating a Decade Since Discovery: Propelling Forward into the Future

Organized by PURA SYNDROME FOUNDATION

$202,577

561 Supporters

81% of $250,000 goal

Tilly's Warriors

Fundraiser since Oct 2024

Share Tilly's Warriors Page

$3,640

28 supporters

72% of $5,000 goal

Tilly's Warriors Story

Tilly's name means "mighty in battle." It definitely describes what it feels like to be Tilly - 24/7 scoliosis brace, seizure helmet, foot orthotics are her armor. She still battles 12 to 20 drop seizures per day, despite 2.5 years of trialing various medication combinations, most of which you would not wish on your worst enemy. Yuck! This year, she suffered several battle wounds, most notably the loss of her permanent front tooth inflicted by a drop seizure. So far, she's been able to keep her sense of humor and joy through every trial and tribulation. Her amazing strength and resiliency lift up those around her. We need your help to support the PURA Syndrome Foundation's efforts to advance research into effective treatments for PURA epilepsy and continued family support through our annual conference. A small one-time or monthly donation goes a long way in support of our entirely-volunteer run foundation!

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$9,405

46 Supporters

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$9,975

16 Supporters

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$2,552

55 Supporters

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$3,475

30 Supporters

Tilly's Warriors

$3,640

28 Supporters

Vivienne's Lemonade for PURA

$3,100

26 Supporters

Liz Astridge

$3,850

14 Supporters

Brandon

$3,444.18

12 Supporters

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$1,901.53

21 Supporters

Micah's

$3,050

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Sarah Anderson

$1,132

25 Supporters

Story

$202,577

561 Supporters

81% of $250,000 goal

Anonymous made a donation

1 day ago

May Allah grant us all with PURA Jannah ! Inchallah!

Anonymous loved this

$150

Tilly's Warriors received a $150 donation from Jim Melendi

10 days ago

In honor of my dear friend, Michael Bookman.

Barbara loved this

$25

Tilly's Warriors received a $25 donation from Phyllis Rogoff

10 days ago

In loving memory of Mike Bookman

Anonymous and 1 other

$100

Sarah Falcone made a $100 donation

10 days ago

Barbara loved this

$100

Tilly's Warriors received a $100 donation from The Gibson Family

11 days ago

For Tilly in memory of Mike Bookman.

Barbara loved this

$25

Tilly's Warriors received a $25 donation from Shirley and Frank Entis

11 days ago

Sincere condolences on the passing of your beloved husband, Michael Kurt Bookman

Barbara loved this

$100

Barbara Cerra made a $100 donation

13 days ago

In honor of our Elaina Joy.

Barbara and 2 others

Nancy She is so beautiful and thank you!

13 days ago

$100

Brandon received a $100 donation from Mimi and Papa

15 days ago

With all our love.

Anonymous and 3 others

Together for PURA

By PURA SYNDROME FOUNDATION

Together for PURA

Commemorating a Decade Since Discovery: Propelling Forward into the Future

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