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May 22, 2020

TOPIC: Featured News, Patients & Members, Advocacy, Head of the Herd

Head of the Herd: Emile Najm, KAT6A Foundation

Posted at May 5, 2020 08:46 am by Laura Mullen

At the head of the herd is… Emile Najm, Chief Executive Officer, KAT6A Foundation

Emile most frequently checks his…  Facebook account

Emile advocates for those living with… A rare syndrome resulting from a mutation in the KAT6A gene.

Emile is located in… West Nyack, New York

How Emile got here… Emile Najm’s son was diagnosed with KAT6A syndrome in 2017. Since then,… Read More

March 20, 2020

TOPIC: Featured News, Patients & Members, Patient Stories, Head of the Herd

Head of the Herd: Michele Sloan, Foundation to Fight H-abc

Posted at March 3, 2020 07:59 am by Laura Mullen

Head of the Herd: Michele Sloan, Foundation to Fight H-abc

At the head of the herd is… Michele Sloan, Director, Foundation to Fight H-abc

Michele most frequently checks her… Facebook page

Michele advocates for those living with… Hypomyelination with atrophy of basal… Read More

March 6, 2020

TOPIC: Featured News, Patients & Members, Advocacy, Patient Stories, Head of the Herd

Head of the Herd: Akiva Zablocki, The Hyper IgM Foundation

Posted at March 3, 2020 07:59 am by Laura Mullen

At the head of the herd is… Akiva Zablocki, President, The Hyper IgM Foundation

Akiva most frequently checks his…  https://www.facebook.com/Akiva 

Akiva advocates for those living with… hyper IgM syndrome

Akiva is located in… New York, NY

How Akiva got here…

In 2013, my son was… Read More

February 14, 2020

TOPIC: Featured News, Patients & Members, Advocacy, Head of the Herd

Head of the Herd: Bonnie Royster, CdLS Foundation

Posted at February 2, 2020 09:05 am by Laura Mullen

At the head of the herd is… Bonnie Royster, Executive Director, Cornelia de Lange Syndrome (CdLS) Foundation

Bonnie most frequently checks her… Facebook 

Bonnie advocates for those living with… Cornelia de Lange syndrome, or “CdLS”

Bonnie is located in… Avon, CT

How Bonnie got here…

I have a corporate background… Read More

January 31, 2020

TOPIC: Featured News, Patients & Members, Advocacy, Head of the Herd

Head of the Herd: Mike Morris, TANGO2 Research Foundation

Posted at January 1, 2020 08:32 am by Laura Mullen

At the head of the herd is… Mike Morris, Co-Founder & President, TANGO2 Research Foundation

Get in touch with Mike on… Facebook and Twitter

Mike advocates for those living with… TANGO2 disorder

Mike is located in… Middletown, CT

How Mike got here… 

My son Ryan was diagnosed with TANGO2 disorder in… Read More