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In Recognition of Piper A. Paul

posted May 2017
In Recognition of Piper A. Paul

Connecting Families was extremely honored to have attorney Piper Paul speak to our families about the challenges of having UCD children in the public school system. The Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973 can be difficult for many to navigate and we thank Piper for going in depth on how to be sure our “rare” children are getting needs met in accordance with Federal laws. These laws apply to all with disabilities that fall under the Americans with Disablities Act (ADA) and we thank Piper for making it easy to understand, and for making herself available to those who may need her help at their local level. She fights with a passion for those who aren’t being treated properly and for those who can’t fight for themselves.
She was also gracious enough to make available her powerpoint notes, along with her contact info. They are downloadable as a Powerpoint below, if you have trouble downloading the content contact Robin at CFUCDF main number or on FB and we’ll get it to you right away.

We Love you Piper,
Robin and Michael Deleon
Connecting Families UCD Foundation
How to Effectively Advocate for Accommodations_P. Paul.5.1.2017

 

 

 

 

posted December 2016
Dr. Stephen Cederbaum: NORD/2016 Rare Impact Award Honoree

NORD (National Organization for Rare Disorders, www.raredisease.org) presents Stephen Cederbaum, MD, a medical geneticist and expert on inborn errors of metabolism, the 2016 Rare Impact Award. Dr. Cederbaum has been affiliated for many years with the University of California, Los Angeles, as a professor, medical researcher and clinician. He has conducted pioneering research, published widely acclaimed papers and advanced understanding of urea cycle disorders, and in particular arginase deficiency, in his distinguished academic career.

But to the families of the children who are his patients, he is “Steve” = a kind and compassionate friend and guide through the trauma of receiving a rare disease diagnosis and the ongoing stress of living with a life-threatening medical condition.

“Our world changed forever with our child’s diagnosis and it would have been very different if not impossible without Steve,” one parent wrote. To his patients and their families, Dr. Cederbaum is never more than a phone call or email away and always willing to spend as much time as needed to answer questions and address fears.“He provides information, explanations and support,” another parent said. “He has no ‘former patients’ because he is always there. Time, space, distance make no difference. “ (see post on Thanks To page at UCDFamily.org)

Original post: Christina Jensen