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2009 Community in Action

The following activities took place in 2009. We want to hear what you’ve been doing this year! Please email us at advocacy@primaryimmune.org!

IDF Volunteers and Staff convey the needs of the PIDD community with policy makers across the country!

Advocacy Volunteers at Work
Jenny Gardner in Florida got in to meet and briefly speak with Senator Bill Nelson; Jenny also met with staffers in Senators Nelson’s & Martinez’s offices as well as Congressman Robert Wexler as she lobbied to get their support on proposed federal legislation; Jenny stayed in regular contact with these staffers through phone calls and emails, ….Kimberly Buck spent an evening sharing dinner with Louisiana Governor Jindal and other state policy makers…. Marcia Boyle and Larry LaMotte met with Maryland Congressman Elijah Cummings, asking him to co-sponsor HR 2002, the Medicare Patient IVIG Access Act (and he did!)…. Kira G was also successful in getting Ohio Congressman Patrick Tiberi to co-sponsorship HR 2002 ….John Boyle from Maryland attended, and spoke at a town hall meeting for Congressman John Sarbanes (resulting in the Congressman’s co-sponsorship of HR 2002!)….At a dinner for Congresswoman Doris Matsui from California, Marcia Boyle spoke with both the Congresswoman and her colleague, Congressman Henry Waxman, over a plateful of sushi….Susan Giorgi-Branch met with Rhode Island Governor Donald Carcaeri to discuss establishing newborn screening for SCID in their state; Susan continued her efforts in meetings with Brown University professor Dr. Joel Weltman and Dr. Yalcindag with the Department of Pediatrics at Rhode Island Hospital…Bill Hindin got the opportunity to meet with New York City Mayor Michael Bloomberg, showing his support of the New York Yankees as well as the PIDD community… Ginnie Job from Kansas attended a fundraiser for Congressman Dennis Moore, at which she was able to speak with the Congressman about PIDD…Arizona resident Steve Fietek was able to do the same when he attended a healthcare meeting with Congressman Raul Grijalva….Stefani Bush met with a staff member in Senator Kerry’s Massachusetts office and stayed in regular contact with this staffer through phone calls and emails, as they worked on getting federal legislation passed that would positively impact the PIDD community.

Primary Immunodeficiency Awareness Month
Several states and one city declared April as Primary Immunodeficiency Awareness Month! IDF Staff and Volunteers worked diligently to get this recognition: Connie Martin in Alabama….Carol King in Arkansas….Judy Kozulak from Delaware….Tommie Cassen in Kansas….Stefani Bush in Massachusetts….Larry LaMotte from Maryland….Cathy Palmer from Oklahoma….Bill Hindin in New York City… IDF Volunteers in South Carolina, Tennessee and Indiana

We’re gearing up for Primary Immunodeficiency Awareness Month for 2010!! Please email us if you would like to procure one proclaiming April 2010 as PIDD Awareness Month in your state!

Advocacy Channel
Several IDF volunteers shared their personal stories with the world through the IDF Advocacy Channel: Jenny Gardner from Florida…Terri Cerda in Nevada…Ginnie Job from Kansas…Stephanie Sanderson in Iowa…Michigan resident Donna Decker.

Does anyone have a story they would like to share through IDF’s Advocacy Channel? Please email us and tell us about it!

State Efforts
On a couple of cold winter days in Minnesota, three Volunteers joined fellow Volunteer Peggy Larson, and Kathy Antilla in meetings with state legislators to discuss the Standards of Care legislation proposed by State Senator Sheran and State Representative Norton.

2009 Advocacy Day
Last but not least, 47 volunteers from 31 different states flew into Washington DC for a very busy day of meeting with their Members of Congress! Those who braved air travel and cold, rainy Spring weather in DC participated in this effort are as follows: Alabama - Connie Martin & Dr. Harry Schroeder….Arizona – Steve Fietek & Sonia Vohnout….Arkansas – Carol King….Delaware – Judy Kozulak….Florida – Ed Ganley, Pat Ganley & Jenny Gardner…. Kansas – Tommie Cassen & Ginnie Job…. Louisiana – Kimberly Buck….Maine – Dana Currie….Massachusetts – three Volunteers including Stefani Bush & Towma Rastad….Michigan – Kathi Beiswenger & Donna Decker….Minnesota – Kathy Antilla…. Nevada – TerriCerda….New Jersey – Frances Massa….New Mexico – Margaret Hamilton….New York – Bill Hindin…. Oklahoma – Cathy Palmer & Dustin Palmer….Oregon – Ken Bass….Rhode Island – Kevin Mowry….Texas – a family team as well as Karissa Ybarra…. Utah – Rodger & Branson …. Washington – Judy Field was joined by another IDF Volunteer. In addition we had family teams from Idaho and Illinois …and representatives from Iowa, Kentucky, Nebraska, North Dakota, Pennsylvania, Tennessee, Virginia, and Wisconsin.

If you have met with your state legislators, Members of Congress or other policy makers or their staff, please let us know!

News Category:

Comments

Great work everyone! I am just so excited to see so many people doing so many great things within their communities! I am proud to be a part of it! Looking forward to continuing our efforts together! Blessings Stefani Bush

We are making a difference by sharing our stories. Thank you so much to every volunteer and member of IDF. Because of you, this struggle of having a PIDD seems a little bit easier!

wende--you forgot me in the state proclamation section LOL Dana Currie, Seboeis Plt, ME pop 41!

what committee's are the ones that the congressman have to be on to come to Capitol Hill day?