HOPE IN ACTION

An Evening for Frizzle

EVENT DETAILS

  • Wednesday, May 20, 2026

  • 6:00pm-9:00pm

  • Terrace, Macquarie Group Limited

  • 660 Fifth Avenue, New York, NY, 10103 US

Your are invited to a special evening bringing together friends, partners, and supporters of Finding Hope for Frizzle (FRRS1L).

This event will support the final funding needed to complete manufacturing and launch the first clinical trial for children with Frizzle disease, with patient dosing planned for September 2026. Join us to learn more about the progress made, the path ahead, and how this community can help bring a potential first treatment to children and families who urgently need it.

Please RSVP YES or NO Today! 
Space is limited for this event so please let us know in the form below if you can or cannot attend.

A smiling girl with curly hair in a pink shirt sitting in a wheelchair in a living room.
Young boy with curly hair sitting in a black stroller, wearing a green T-shirt with a yin-yang symbol and a black cap with a logo, making a relaxed facial expression.
Young girl lying in a hospital bed, connected to medical tubes and equipment, resting her head on a pink and blue bed pillow with a colorful blanket.

HELP FUND THE CURE

These sweet, but struggling children, now have HOPE that treatment is possible that will save their lives and change the world, but we need your help to fund it.

A young girl in a hospital bed wearing a patterned hospital gown, with medical tubes attached, a breathing mask, and a wrist band. She is resting with her eyes closed, surrounded by medical equipment and colorful toys.
A young child with curly hair wearing blue glasses and a bib that says 'Mini & Mighty' sitting at a table with a piece of bread.
A young girl with a serious expression wearing glasses, lying in a hospital bed with a breathing tube, holding a Minnie Mouse plush toy, surrounded by colorful paper hearts on the wall behind her.
A young boy with glasses and brown hair smiling, wearing a neck support, sitting in a wheelchair with an orange cover, in a room with curtains and a brick wall background.
Young girl in a wheelchair with a therapy vest and colorful shoes sitting at a glass table with a toy behind her. The image is taken indoors in a living room with furniture and a lamp.
A young boy with dark hair, smiling widely, sitting on a bed with blue and patterned pillows.
A young woman with long curly hair sitting in a wheelchair, holding a black object to her face, leaning slightly backward, with an open mouth and eyes half-closed, in a room near a sliding glass door with open blinds, sunlight streaming in.