We recently surveyed our families for feedback on our programming and to understand their current challenges. Here are a few stats that caught our attention:

• 76% want community, connection, and friendship with other B2g families
• 62% are looking for play opportunities for their children (siblings too!)
• 66% share that there is no time or space to pay attention to their own needs
• 93% think mental health and self-care would be a helpful focus at B2g

Our parents know they must take care of themselves to care for their child. Still, they sometimes don’t know how to make it happen while juggling doctor appointments, medications, insurance, school meetings, siblings, and so much more.

You’ll see this theme in the story below about B2g champion kid Desi. Alisha, Desi’s mom, shares “I think it’s harder on the parent than it is on the child. Children only understand and feel love and support. But parents can get so busy providing that love and support, they may not always pay attention to their own needs.”

This is a BIG need we’re talking about and it will require us to think BIG about how we show up for our medically complex kids and their families.

That’s why we’re working in partnership with the Complex Care Clinic team at the Children’s Hospital of Richmond at VCU to expand access, resources, and programming for B2g families when they need it most.

More updates to come as we roll out the BIG plans!

Gratefully yours,

Stephanie Becker
Executive Director

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Champions

Meet B2g Champion Desi!

The name “Desiree” means “the desired one.” For (almost) ten-year-old Desi, this name is incredibly fitting.

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For a year and a half, Desi’s family sought multiple medical opinions both in and outside of the Richmond area – including geneticists and specialists. However, the geneticist at VCU finally diagnosed her with a rare genetic syndrome called Cornelia de Lange syndrome (CdLS). This syndrome typically impacts growth, cognitive and behavioral development, and multiple internal organs, including the gastrointestinal, cardiac, and neurologic systems.

“Now we had a label and a name,” shares Alisha “While we had always been treating Desi’s symptoms, the diagnosis helped us focus on getting the specific support and services she needed.”

Alisha and her family first became involved with Better2gether because they wanted to experience outings with other families and gain support from other parents who share similar journeys. One of their highlights was attending a Better2gether Summer Bash program. “Desi enjoyed watching the kids,” Alisha shares. “And we appreciated having the space and accessibility that allowed the children to make crafts and participate in activities.”

Thank you to our community of donors for giving families a community to lean on!

Desi’s Story

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Programs

Send a kid a BIG (bear) HUG!

Earlier this month we kicked off the BIG (bear) HUG campaign with the goal of sending every B2g champion kid a care package. We have 11 care packages remaining that need a donor to sponsor. Can we count on you to help?

Sending a BIG (bear) Hug in February helps to show the Valentine’s Day love and celebrate Rare Disease Awareness Month. With a $35 donation, you can brighten up a child’s day and let them know our community cares about rare!

Your gift also supports our critical work of providing resource coordination to families caring for their medically complex children. Whether listening to a family’s fears, securing needed supplies, or organizing a caregiver support group, your gift delivers a lot of love.

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