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Contact

Phone: 773-751-9010

E-Mail: smard@smashsmard.org

Address: 3 Londonderry Lane

               Lincolnshire, IL 60069

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smashSMARD is recognized as tax-exempt under section 501(c)3 of the Internal Revenue Code. EIN: 82-5388567

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Education

Learn more about this rare disease and get to know some of the families living with it daily.

Our Mission

SmashSMARD is spreading awareness and raising funds to support promising research for treatments.

Research

Gene Therapy research is going on now. Learn more about it and how smashSMARD is helping.

Get Involved

There are lots of  fun ways you can join us in our mission to find a cure for IGHMBP2 disorders.

WE ARE ON A MISSION TO FIND A CURE

SMARD stands for Spinal Muscular Atrophy with Respiratory Distress (also known as SMARD1). There is little known about this ultra rare and often fatal disease. Its rarity is of no comfort for the families affected by SMARD, and so we are building a community to promote awareness and research to make a cure a reality. 

#SMASHSMARD​​​​​

Gene therapy research for SMARD is in progress, but we need YOUR help to raise approximately $1.5 million to keep the research moving forward. Gene therapy aims to replace or correct the faulty IGHMBP2 gene and is a well-documented treatment for this disease in animal models. The plan is to translate this promising data into human clinical trial as early as 2020!

This video shows success of gene therapy in mice at the Univesity of Milan (AAV-null mouse is untreated; AAV-IGHMBP2 has received gene therapy).

SMARD Family Spotlight

Meet Angel Kate

 

Click here to learn more about Kate's story.

Meet Landen

 

​I'm nine-month-old Landen from Kansas. Click here to learn more about me and my family.

Our small SMARD community is committed to spreading the word and doing all we can to get these wonderful kids treatment as soon as possible. For a critically ill individual, everyday is a celebration of life and we plan to celebrate each of these faces for many many more days and years to come.

We are Funding Research Now for SMARD, CMT2S and IGHMBP2!

 

UPCOMING EVENTS

DONATE FOR A CHANCE TO WIN UK VS. UOFL BBALL TIX
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