Leading the Fight to treat and cure
Tay-Sachs, Canavan, Sandhoff, GM1 and related diseases

Miracles for Mollie and Madelyn

 

Moving Mountains:

It has been over three years since our two youngest daughters Mollie (12) and Madelyn (9) have been diagnosed with Juvenile Sandhoff Disease.  Pictures and videos remind us of how both girls were in dance,  soccer, and playing normally until 4-5 years ago.  As with all children with this rare genetic neurological disease, the continued damage to the nerve cells has caused a loss in cognitive ability, most of their speech, and other health related issues.  However, through the efforts of NTSAD and groups across the nation like our local community, financial support has been raised to advance the research for a potential treatment for Sandhoff to the point of human clinical trial, a trial in which the girls may be eligible to participate in.  Other than their daily care, our primary focus is to help ensure this clinical trial can be established and under way and to help start the next generation of research.

To that end, we would like to thank everyone who supported us last year during our 2nd annual Miracles for Mollie and Madelyn Day of Hope events: Dance Off for Sandhoff and Racing for Results.  Please visit the "Miracles for Mollie and Madelyn" page on Facebook for details on events for 2019.  For those who cannot participate in any of those events and would still like to donate directly to the research, you can follow this link: 

Donate Today

While those gifted in the medical field work out a solution, we ask first and foremost for continued prayer in that God would allow the girls to be completely healed.  We, as a family, are holding on to God’s Word and this following scripture specifically:

Rejoice in the Lord always; again I will say rejoice! Let your gentle spirit be known to all men. The Lord is near. Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus. Philippians 4:4-7

 

Thank you all for your support and care for our family!

Under God's Grace,

Jeff and Mandy Ronaldson and Aaron, Emma, Mollie, Madelyn

 

 

Miracles for Mollie & Madelyn

What is Sandhoff?

Sandhoff is a lysosomal storage disorder. It is caused by a mutation in the gene responsible for the vital enzymes called beta hexaminidase A and B. The role of these enzymes is to degrade a fatty substance or lipid called GM-2 ganglioside. In the absence of the enzymes, GM-2 accumulates abnormally in cells, especially in the nerve cells, or neurons, of the brain. This ongoing accumulation, or "storage", of GM-2 causes progressive damage and eventually death of the cells.

What about research?

Sandhoff Disease research is usually performed simultaneously with Tay-Sachs disease research. This is because these two diseases have a similar underlying biochemical mechanism.

Read more about Sandhoff Research here.

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