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Welcome to Hope for SPTAN1, a source of information and connection for families impacted by an SPTAN1 genetic mutation. We are dedicated to connecting families to genetic research, definitions, support, and fundraising efforts. Below are ways to help make a difference in the lives of these families. Thank you for your support!

Accessible Transportation

We are reaching out to share an important need in our lives right now. As many of you know, our active family of five includes our identical twin girls who have a rare condition caused by a mutation of the SPTAN1 gene. This condition brings with it severe disabilities, which means we need a special way to transport them safely. Currently, transporting the girls in our van requires two people to lift their wheelchairs, and this is becoming increasingly difficult as the girls grow. We urgently need to modify our van with a wheelchair lift or ramp, especially as their needs continue to grow, so that one caregiver can manage transportation safely and easily.

Please consider supporting us during this urgent time with the following actions:

  1. Select an option from our Support Registry to provide help through money or gift cards.

  2. Click 'Share' to let others know about our situation and help spread the word to your family and friends.

  3. Click 'Follow' Updates to receive the latest information and stay informed about our progress.

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Camden Strong

As with most medically complex kids, therapies and interventions are not always covered by insurance...and they can add up! If you'd like to support Camden and his family, check out the #CamdenStrong campaign page!

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© 2025 by Trisha Lockard 

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This website is for informational purposes only. For medical advice or diagnosis, consult a professional.

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