Foundation

Family Board

The Family Board was established in August 2024 to articulate the specific needs of patients and to enhance the Foundation’s efforts on an international scale, including potential global initiatives in both research and fundraising.

Lainey Moseley

Lainey Moseley

Leta's mother
Eastern USA.
Giovanni Zampella

Giovanni Zampella

Mario's father
Italy
Suzanne Steyn

Suzanne Steyn

Secretary and grandmother of Salvador - South Africa
Kayla Caceres

Kayla Caceres

Mother of Kyrie
Western USA
Griselda Franco

Griselda Franco

Francisco's mother
Central USA
Josue Susperregi

Josue Susperregi

Father of Eider
France
Dani Mc Lennan

Dani Mc Lennan

Jakob's mum
Australia
Jennifer Rayman

Jennifer Rayman

Mother of Amelia
Canada
Lisa Mcintosh Conlon​

Lisa Mcintosh Conlon

Mum of Mae
UK
Rae Sandilands

Rae Sandilands

Mum of Salvador
South Africa.

La Sindrome Chops

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