KrabbeConnect

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Krabbe Disease Heroes

The KrabbeConnect Hero page was created for individuals living and no longer living with Krabbe disease.  This page helps others to understand the impact of the disease, helps educate healthcare professionals and companies on the numerous lives affected by Krabbe disease as well as helps provide a place of remembrance.  At KrabbeConnect we never want to forget about any loved one diagnosed with Krabbe disease and gone before we could #curekrabbe.

We invite you to take a moment today and upload a picture of your hero impacted by Krabbe disease.  If your hero is already a part of our webpage but is now a few years older, we would love for you to upload a new photo.  The higher the resolution, the crisper the image and the better the photo will appear on the webpage.  Uploaded photos of higher resolution may also be used in other educational media pieces as needed.  Consent information is defined in our online form prior to uploading your hero’s photo.

Fill out this form to submit your Krabbe hero.

BONUS - All hero pictures are exhibited each year during the A Million Dreams Gala Hero Tribute video.  Here is the 2021 Krabbe disease tribute video.  Should you have any questions, please email us at info@krabbeconnect.org

Alessandro G.

Roma Italia

Alex T.

Eau Claire, WI Read Family Story

Alexander L.

Morgantown, WV

Angela A.

San Antonio, TX

Angelita D.

Honduras

Anna Rose J.

Bracknell, UK

Anna T.

Beaver Dam, KY

Anniston B.

Lafayette, LA

Anthony C.

Brooklyn, NY

Anthony M.

Wyandotte, MI

Anthony S.

Millers Creek, NC

Aron Eli O.

Reykjavik, Iceland

Аrtёm D. -r.p.Sargatskoe Omskaja oblastʹ

Artëm D.

r.p.Sargatskoe Omskaja oblastʹ

Ashley C.

Sun Prairire, WI

Aubrey C.

Cuyahoga Falls, OH

Avery C.

Warwick, RI

Belle M.

Stillwater, MN

Brittany W.

Radcliff, KY

Bryan W.

Hodgenville, KY

Bryce C.

Indianapolis, IN

Cade H.

Calgary, AB

Casey M.

Ireland

Cassidy J.

Montevideo, MN

Christopher S.

Metolius, OR

Cloud K.

Bainbridge, GA

Collin C.

Wisconsin Rapids, WI

Dalton S.

Millers Creek, NC

Daniel H.

San Jose, CA

Darian H.

Humacao, Puerto Rico

David A.

Garner, NC

David B.

Akron, Ohio

Dawson F.

Franklin, VA

Delilah S.

Kent, UK

Dennis M.Ø

Norway

DJ O.

Havertown, PA  

Duarte E.

Braga, Portugal

Dylan M.

Washington, IL

Elif C.

Istanbul TURKEY  

Emmalynn A.

Neon Ky  

Emmett B.

Harrisburg, NC

Emmett

Emmett K.

Clear Lake, SD

Emmett M.

Beaverton, OR

Eva-Rose S.

Derby, United Kingdom  

Evie Beth S.

North Yorkshire, UK

Ezra B.

St. Louis, MO

Gina R.

Cincinatti, OH

Ginevra A.

Alessandria, Italy

Giovanni M.

Lakewood, Oh  

Graham C.

Morton, Illinois  

Grayson M.

Boise, ID

Grazia S.

Siracusa, Italy

Hasan M.

Melrose, MA

Hristo L.

Birmingham,UK

Jace P.

Portland, Mi

Jacksea T.

Grand Forks, ND

Jackson G.

Lawrenceville, GA

Jackson W.

Rhome, TX

Jasper M.

Columbus, OH

Jaxon S.

Galesburg, IL  

Jayven R.

Bay St. Louis, MS

Jeramie E.

Janesville, WI

Jeremy T.

Eau Claire, WI

Jyvhre S.

Jhyrve S.

Pittsburg, CA

Jia K.

Seoul, Republic of Korea

Jody V.

N. Liberty, IA

Joshua B.

New Milford, PA

Joshua C.

Cedar Rapids, IA

Julia B.

Ann Arbor, MI

Juni H.

Gothenburg, Sweden

Kenan W.

Chicago, IL

Kian and Luis K.

UK

Kody G.

Caldwell, ID  

Kohen K.

Pekin, IL

Kyran D.

Brisbane, Australia

Lana S.

North Riverside, IL

Laura C.

Cedar Rapids, IA

Leandra F.

Brazil, IN

Lennon F.

Piketon, OH

Levi P.

Ontario, Canada

Liam H.

Chicago, IL

Lucas N.

Pensacola, FL

Lucille F.

Ozone, AR  

Mabry Kate W.

Powell, TX

Makayla P.

Burnsville, MN

Marcus G.

La Pryor, TX

Marcus M.

Wyandotte, MI

Maria E.

Barcelos, Portugal

Mariah G.

La Pryor, TX

Marshall W.

Dayton, OR

Martin S.

Exeter, UK

Mason L.

Selangor, Malaysia  

Matthew S.

Clare, MI

Max B.

Phoenix, AZ

McKenna T.

Modesto, CA

Michael W.

Dayton, OR

Mila L.

Southaven, MS

Naomi H.

Simpsonville, SC

Nassiah J.

Chicago, IL

Nicholas B.

New Milford, PA

Nick R.

Cincinnati, OH

Nico B.

Rockford, Illinois Read Family Story

Nikola G.

Newport News, VA

Odin FW.

Johnson City, NY

Oliver P.

Surrey, UK

Owen W.

Powell, Tx

Parker Janelle G.

Tempe, Arizona

Patrick S.

Svizzera

Quinton N.

Des Plaines, IL

Rebekah F.

Western Cape, South Africa

Reesa S.

Scottsdale, AZ

Regann M.

Springfield, Mo

Reuben N.

Dunedin, New Zealand

Rocco W.

London, UK

Roman R.

Poole dorset, UK

Rowan S.

Nova Scotia, Canada

Sakina M.

Dawsonville GA

Sandrine D.

Montreal, Canada

Saylor S.

Richland MI

Scarlett M.

Pikeville, TN

Sofia B.

Fairfax, VA  

Sophia S.

Kannapolis, NC

Sophie T.

Gateshead, UK  

Sulaiman M.

Buford, GA

Sunny H.

Bayside, CA

Taiten B.

Eagle Mountain, UT

Thomas H.

Ayden, NC

Trevor L.

Baldwin City, KS

Tygh D.

Puryear, TN

Tymoteusz Mikołaj K.

Pław, Poland

Victoria B.

Hershey, PA

Vladimir D.

Comayagua, Honduras

William B.

Davenport, IA

Zander M.

Erie, PA

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Contact Us

KrabbeConnect
P.O. Box 264
Rosemount, MN 55068-0264

(800) 800-5509 toll-free
Info@KrabbeConnect.org

OUR VISION

A day in which each patient receives an early diagnosis, has access to state-of-the-art care, and lives a life free of Krabbe disease.

Newly Diagnosed

  • Treatment and Resource Maps
  • Understanding Krabbe Disease
  • Krabbe Disease Forms
  • Testing, Treatment and Clinical Care
  • Transplant for Krabbe Disease Therapy

Patients & Caregivers

  • Connect with a Clinical Expert
  • Genetic Counselor/Care Team Knowledge
  • Advocating for Your Patient
  • Krabbe Disease Patient Support Team
  • English

Research & Education

  • Research, Studies & Trials
  • Clinical Trial
  • Brain and Tissue Bank
  • Listen and Learn Webinars
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Pennsylvania (Opt-In)

Currently Krabbe disease is not automatically screened for in the state of Pennsylvania. Parents must request or “Opt-In” to have Krabbe added to the newborn screening tests done at birth.

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