WHERE THE MONEY IS GOING
All donations are tax deductible and go to KIF1A.ORG, a patient-led nonprofit 501c3 (Tax ID: 82-0714729) that supports KIF1A research at the Chung Laboratory at Columbia University Medical Center. 100% of the funds benefit this vital research needed to find treatment for children living with KIF1A.
WHAT IS KIF1A
KIF1A Disorder is a very rare and degenerative neurological disease affecting children born with a mutation in the KIF1A gene. Researchers and physicians at Columbia University Medical Center are relentlessly working to discover treatment for every child living with KIF1A. We have an urgent need to accelerate this research, and your donation today drives us closer to a cure.
Approximately 30 children in the world are reported to have KIF1A. There is no cure or treatment. Yet.
With your help we will fund a fleet of scientists to work around the clock and discover a cure for every child living with KIF1A. Waiting is not an option for KIF1A kids, we need treatment today.
Mutations in KIF1A cause the following disorders:
• Cognitive impairment
• Cerebellar atrophy
• Spastic paraplegia
• Optic nerve atrophy
• Peripheral neuropathy
OUR STORY: KIF1A.ORG, INC.
In August 2016, our two-year old daughter, Susannah, was diagnosed with a rare, neurodegenerative disease called KIF1A-related disorder. There is no cure or treatment for this condition. We started a foundation, KIF1A.ORG, to connect patients and raise money to find a cure for Susannah, and all the KIF1A families that reached out. Gene therapy and drug development are within reach, but there are two things preventing us from finding that cure: time and money.
There is no time to wait, we need to find treatment today. With your support we can make that happen.
Turner Thanks You!
November 5, 2017
Did you know Dr. Chung’s Lab is working on a Natural History Study of KIF1A patients? These lengthy and detailed studies are crucial for researchers to understand rare diseases in our quest for treatment. Turner is thankful for the scientists at Chung Lab and people like you who support our efforts! #KIF1AKids #ThankYOU #CureKIF1A
November Thanks You!
November 4, 2017
Thanks to Kathryn and #TeamParker for designing our November Thank You messages! If you make a small monthly donation, soon you will have a whole collage of KIF1A Kids saying "Thank You!"
Thank you to our supporters for helping us discover treatment for every child living with KIF1A.
Bake and Craft Sale!
October 29, 2017
Thank you Van Pelt and Opie Library Staff! GREAT fundraiser! You mean the world to all the KIF1A families!
Superhero of the Week
October 4, 2017
This week's KIF1A Superhero is... EDWARD!
Thanks for the support team, lets drive through and hit $90,000 during Edwards week!
September 19, 2017
Drumroll please... This week's KIF1A Superhero is... Caitlin!
Superheroes of the Week... Eleonora and Florence!
September 8, 2017
September 2, 2017
Lets Power Into Fall: Re Search
September 1, 2017
Ok, that's one word. But lets get our research funding going strong heading into the school year. Thanks for the support team, keep on going!
August 27, 2017
Last week somebody very wise told me "We all have mountains in front of us, the question is who is brave enough to climb to the summit?" KIF1A Kids are.
Parker made it .25 miles at Lake Springfield Park and Boathouse this morning. First time we have gone this far! And then he walked the whole way back! #TeamParker #KIf1aKid #Win
$40 Every Week. Who's Ready?
August 26, 2017
We have 48 strong families in our group.
If each family raises $40 every week for one year, we can raise $100,000 in one year.
If each family found 4 friends to donate $10 every week for one year, we can raise $100,000 in one year.
$160 every month is a lot to ask, but lets join forces and fund KIF1A research.
Who's ready to commit?
Finish August Strong
August 26, 2017
Thank you supporters! Lets finish August strong and reach our goal!
Superhero of the Week... BRECK!
August 18, 2017
Hello incredible supporters! This week's Superhero is Super Breck!
August 6, 2017
What an amazing day. Thanks to all our incredible supporters for a great KIF1A Day!
Superhero of the Week!
August 2, 2017
Drumroll please..... This week's KIF1A Superhero is Eleonora! All the way from Sweden, our amazing KIF1A family sends you a big high five. http://www.kif1a.org/eleonora.html
July 29, 2017
Donate $20 before midnight tonight and we'll name a drink after you on KIF1A Day!
Hug a Superhero
July 28, 2017
Have a great weekend, Superheroes! Thanks for the support - it was a great week.
July 25, 2017
Another Great Week!
July 24, 2017
More progress this week! Keep ip the great work.
Adventures of Parker!
July 12, 2017
Check out this incredible blog by #TeamParker!
Use the force!
July 6, 2017
Some great awareness being spread by KIF1A supporters and families.
Click HERE to read about Austin and Sadie in the KIF1A Blog.
AND Don't forget to register for KIF1A Day and support our mission to Cure KIF1A!
Keep the force strong, Parker sure does!
KIF1A SUPERHERO OF THE WEEK!
June 30, 2017
Thank You Donors! April-June Donor List: $43,000!
June 22, 2017
RYAN AND BETSY TOBEN - BAR AMERICAN - THE SCOTT FAMILY - GREG OLSON - THOMAS YAGODA - ANTHONY LAGE - DIAMANDO STRATAKOS - JAMIE TURNER - KENNETH CARIAS - TRACY MICHAELS - JULIE MORROW - RENEE SALOMON - MATT AND ELIZA CUTRELL - SIMON CAINE - THE UPPER PENINSULA / LOWER PENINSULAR OF MICHIGAN - CAMILLA NICHOLS-UHLER - K CRUSHING - MARIE LABANOSKI - HAROLD PINTES - BRITT MATT - LORAINE BROWN - TEAM ELEONORA - PAMELA JOHNSTON - NICK AND SARAH JACKSON - HONEYLYN GASTLEU - ALEXANDRA PETTERSSON - ANNA LALANGAN - PATRICK DOLLY RAMOS - NINA THOMAS - WILLIAM SCHULTERT - ALLI LABANOSKI - JENNIFER DAEZ - AMY SILVA - CHRISTINE ESGUERRA - SAUNDRA QUINLAN - DEIDRE WILLIAMS - JIHANA CLEMETSON - NADIYM DRAKE - LISA SOLIMEO - ANNA INGRAHAM - PAMELA ONZO - TANYA RAYMOND - MARIEL MONTELEONE - CARRIE LARRIER - BRITTANY WILSON - NEEPA SATA - CHRISTINA SVENNINGSEN - CAITY QUINN - GATO - LYNETTE ERSKINE - K SMITH - DEBBIE ARBUS - DANIELLE LEWIS - LISA FEDRIZZI - RANDI GERITZT - PRISCILLANN SIMPSON - JEN GESELL - MARY ALMONTE - EMILY TERKELL - BECKY LEWIS - ARIA PIERCE - JESSICA ARBUS - KRISTEN CLEVENGER - LINDSAY HITTNER - QUINN FAMILY - SHAKIRA DAVIS - ANDREW GAYLE - ZACHARY BEHR - KIMBERLY VANWYHE - DONNA EDGE-RACHEL - ALLISON ANASTASIO - KRISTIN DODICH - JOHN PETRO - NADIA AND CORRY RUSH - AMY KOHN - ROBERT YACYSHYN - TJ PALLADINO - THE JACKSON FAMILY - THE ROSEN FAMILY - KATIE BOWEN - JESSICA GREENWOOD - NADIA DICLEMENTE - ALISON CARAOTTA - BETTY PARK - ALISSA HOROWITZ - NIKKI L. - JENNIFER TITTLE - JOSE MARI OWERA - ERIC ANDERSON - REBECCA BROMMER - LAZISE CATERING - CHRIS DEMUTH - ERIC GOMBERG - SCOTT MILLER - RAYMOND AND ANNE REILLY - BIANCA JAVIER - THE ZUNIGA FAMILY - GOCE PETRESKI - THE ARCHLY FAMILY - KATHERINE BARBIZON, PETER, AILEEN AND DOGS - LISA LEFEMINE - MICHELLE CHANT - JONATHAN SHAFTER - STACIE DAVIS - SHIRLEY MARTIN - PAULSON & JOHNSON CPA'S - NICOLE ALBANO - JIDOO AND SITOO MALLEN - JUSTIN MACFARLAN - SADIE'S YOOPERS - BRUCE ROWLAND - THE JOHNSON FAMILY - THE EASLEY FAMILY - DUANE PORATH - BUNNY BYINGTON - ANDREW TASERIS - COFFEE COMMISSARY - KATIE MCNAUGHTON - THE JACKSON FAMILY - THE ALLEN FAMILY - STEPHANIE SAVOY - BEBORAH DROZE - JEFFREY STANLEY - BRIAN JOHNSTON - THE SANDSTORMERS - THE ZUKOFSKY FAMILY - CHRISTI SCHMIDT - GARETT NOVOTNEY - CHARLIE'S CHARTERS - JOE LAMB - LEE PROATH - PATRICIA CHAD AIKMAN - JOHN CHAD - LARAINE CHABERSKI - TONA ROWETT - NANCY KIDDER - ATHENA FITZPATRICK - ALLISON GIUSTI - AMY MCLAIN - JESSENIA ORTIZ - ELIZABETH BYRNE AND TOM BRESNAHAN - DAHLIA WARNER - THE WIDZER FAMILY - BENJAMIN AND LEO BAKST - ROBIN BUMP - ANA MINGORANCE - HELENE YORKE - JOANNA SHUMWAY - EVELINE HONIG - DANNYBARNEY - JENNY FALCON - KEITH HARPER - LAUREN MURPHY - DONNA PATTERSON - STEVE BAE - THE KUSHNER FAMILY - SCOTT PLACONA - COURTNEY SCHENKEN - STACYE MAYER - MATTHEW STEVENS - TAMMY HODUSKI - NEGAUNEE MIDDLE SCHOOL - LESLIE KUMMERFELDT - DON JONES - THE SCHOOLS FAMILY - THE CHENOT FAMILY - MELISSA MILLER - T TOROK - BRITTANI DIAMANTI - ASHLEY ALEXANDER - STEPHANIE BANYAS - ASHLEY ALEXANDER - COURTNEY FUGLEIN - THE BIGELOW FAMILY - MIKE AND MARGARET SWEENEY - JODI PROSEK - MAGGS BURBRIDGE - ASTRID BURNS - CHRISTI COSTELLO - MARK ROSEN - EMILY HAMEL - HOLLY FABBRI - ANGELA WEIR - ELIZABETH LIBERT - ROBERT NEILL - THE SULLIVAN FAMILY - KRISTEN SUTLEY - MAGGIE BURNBANK - MOLLY KING - LINDSEY OWEN - HARMONY TANGUAY - JULIA HARRIS - HANNAH HOLDSWORTH - JEANNE REES - LAURA MARSTON - NICK STERN - SIENA COLEGRAVE - THE MORTIMORE FAMILY - THE WEISENGER FAMILY - THE GELHORN FAMILY - LINDSEY KISIELIUS - THE MOGREN FAMILY - SUZANNE AND EMMA REILLY - NICOLE DENNIS - THE HOESE FAMILY - Anonymous -
Thank You Donors!