In Memory of Lynn Giunta

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In loving memory of Lynn Giunta

Please meet Paul Spandikow's Grandma Nana: Lynn Giunta. Lynn passed after many complications on December 5, 2025. Paul lives in her memory along with three children and four other amazing grandchildren. Nana never saw Paul's disability, only his superpowers. She knew how smart he was, what he was capable of, and how kind and able he was from the very beginning. She taught him to walk in her home by letting go and encouraging him. She sat with him after school, taught him to read, write, and do math, and gave him the confidence he needed to excel. He took her strength and will and excelled. With her steadfast support and unwavering love, she helped raise him into an amazing (now 18-year-old!) adult. He misses her dearly- we all do.
We know she would want to support the CACNA1A Foundation's goal of helping all children with CACNA1A-related neurodevelopmental disorders by aggressively funding life-changing research toward treatments and a cure for generations to come! Paul struggles with ataxia, speech, and hemiplegic migraine (stroke-like episodes), and many children also face life-threatening seizures. Some variants are even neurodegenerative.
Grandma Nana loved her family so much. Thank you for honoring her with this donation.

CACNA1A Foundation: Transforming Lives Through Research and Support

CACNA1A-related disorders are a group of neurological and developmental conditions caused by mutations in the CACNA1A gene. These rare diseases pose significant challenges for affected individuals, including developmental delays, autism, intellectual disability, movement and coordination disorders, debilitating dizziness, hemiplegic migraines (similar to stroke episodes), and speech and language issues.

Despite the severity of these disorders, there are currently no targeted treatment options or a cure available. However, hope lies in the work of the CACNA1A Foundation—a parent-founded non-profit organization dedicated to making a difference in the lives of children with this rare disease. The Foundation focuses on three critical areas:

  • Advancing Research: The Foundation aims to uncover insights into the underlying mechanisms of CACNA1A-related disorders by supporting scientific research. This research is essential for developing targeted treatments.
  • Supporting Families: The Foundation provides resources, guidance, and emotional support to families navigating the challenges of caring for a loved one with these disorders. Connecting families and sharing experiences fosters a sense of community.
  • Raising Awareness: Educating the public, healthcare professionals, and policymakers about CACNA1A-related disorders is crucial as increased awareness can lead to earlier diagnoses, improved care, and ultimately, progress toward finding a cure.

Together, we can work toward transforming the lives of those affected by this rare neurodevelopmental genetic disease. To learn more, please visit their website: https://www.cacna1a.org/

As a designated 501(c)(3) nonprofit organization, donations to the CACNA1A Foundation are tax-deductible to the fullest extent allowed by law. EIN 84-4985747

You may also mail a tax-deductible donation to:

CACNA1A Foundation
31 Point Road
Norwalk, CT 06854

If you have any questions about your gift, please email info@cacna1a.org.

WE ARE SO GRATEFUL FOR YOUR SUPPORT OF THIS ORGANIZATION, WHICH MEANS SO MUCH TO OUR FAMILY