[Congressional Record Volume 163, Number 116 (Tuesday, July 11, 2017)]
[Extensions of Remarks]
[Page E956]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                     IN RECOGNITION OF MARCIA BOYLE

                                 ______
                                 

                          HON. DORIS O. MATSUI

                             of california

                    in the house of representatives

                         Tuesday, July 11, 2017

  Ms. MATSUI. Mr. Speaker, I rise today to celebrate the outstanding 
leadership of Marcia Boyle, a rare disease advocate who has dedicated 
the past four decades of her life to helping people impacted by primary 
immunodeficiency diseases. This mission was not a path Marcia would 
have chosen herself. Rather, this mission chose her, and she has 
responded with full vigor to improve life for not only her own son but 
for countless other people in the United States and world impacted by 
one of the more than 300 forms of primary immunodeficiency diseases, or 
PI.
  Thankfully, as a result of Marcia's leadership, the world today is a 
much brighter place for people with PI, though a number of changes 
remain to be addressed. Marcia first started to become a rare disease 
advocate when her son John became seriously ill in the late 1970s. John 
would later be diagnosed with a form of PI and had received the 
appropriate medical treatment, life-sustaining therapy he continues 
utilizing today.
  Marcia recognized the deep need for people like John and their 
families and continued to make a difference for the entire community 
even though her child and family were taken care of. This led to 
Marcia's founding of the Immune Deficiency Foundation, an operation she 
ran out of her kitchen. For a dozen years Marcia worked as a full-time 
volunteer founder and leader of the organization before embarking on 
another career in leading development positions at Johns Hopkins 
Medicine.
  Over the past several years, Marcia has significantly expanded the 
scope, staff and programming of the IDF to reach more persons in need. 
This includes working with the leading clinicians and scientists in the 
field to publish evidence-based guides for other clinicians, for 
parents and for patients. She had served on the board of the National 
Health Council and has been seen as a national and global leader of the 
patient advocacy or voluntary health community.
  Mr. Speaker, I know many in the PI community are saddened by Marcia's 
retirement later this summer. To say Marcia has done the job well would 
be an understatement, and she may have a successor but certainly not a 
replacement. I'm pleased that Marcia will continue her service to IDF 
as a volunteer and member of the board of trustees, and am confident 
that she will continue to help lead this community for decades to come.

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