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Getting the word out about PIDD, NYC style

Joanna at the Staten Island Back to the Beach event with IDF table

IDF volunteer, Joanna Tierno has been all around Staten Island, NY actively educating her community about the Immune Deficiency Foundation and primary immunodeficiency diseasses this month.

Joanna set up tables with IDF literature, brochures, and plush germs at the annual Staten Island Back to the Beach celebration and Where to Turn blood drive.  Back to the Beach took place August 14-15 at the Midland Beach pier.  Staten Island Borough President Jim Molinaro was on hand along with an enthusiastic summer crowd of 30,000 Staten Islanders.  Joanna talked to many people about IDF and PIDD, and even got the kids excited by encouraging them to draw pictures of zebras when they stopped by her table.

Zebra drawing from Maleny, age 10

The blood drive occured August 22 at the St. Mary’s Community Center in Staten Island.  Joanna took the oppportunity to talk to participants about the primary immunodeficiency diseases.  She also spoke with Nicole Malliotakis, candidate for NY State Assembly, about IDF advocacy issues like IVIG access and SCID newborn screening.

This is a great example of using exisiting community events as a springboard to talk to people about primary immunodeficiency diseases and to advocate for the whole PIDD community!  IDF is so lucky to have active volunteers like Joanna spreading the Think Zebra message.   

Joanna's educational table at the blood drive

Let us know if you are involved in any Community In Action in your area!  COMMENT or fill out the Contact form at the top of the page to have your story told in a future blog post.

Posted in Awareness, Community, Community in Action, Education.

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Fantastic SanFran! – IDF Retreat, August 2010

 

Hotel Kabuki

The IDF staff, patients, and volunteers retreated for the second time this summer the weekend of August 13-15 – this time to beautiful and exciting San Francisco, CA!  

The weather was perfect and the venue was fabulous as over 200 attendees from 17 states flocked to the beautiful Hotel Kabuki for the opportunity to meet and become acquainted with other patients and family members who live with primary immunodeficiency diseases and learn more about living with these diseases. For some, it was the first time to attend an IDF event and meet others living with PIDD.

The presenters were amazing- expert immunologists and experienced professionals who volunteered their time and knowledge to provide the most up-to-date and authoritative information on medical and life management issues:

 USIDNet Registry
Jennifer Puck, MD, University of California-San Francisco

Overview of the Immune System and Primary Immunodeficiency
E. Richard Stiehm, MD, UCLA David Geffen School of Medicine

Understanding Immunological Testing
Troy Torgerson, MD, PhD, Seattle Children’s Hospital

Understanding Antibiotic & Antifungal Therapy
Jennifer Puck, MD, University of California-San Francisco

IG Replacement Therapy
Vanessa Howard, RN, FNP, St. Jude Children’s Research Hospital 

Managing GI Issues
Laurence Cheng, MD, PhD, University of California-San Francisco

Managing Lung Issues
John M. Routes, MD, Children’s Hospital of Wisconsin

Antibody Production Defects
E. Richard Stiehm, MD & Troy Torgerson, MD, PhD

Cellular, Combined & Phagocytic Defects
Jennifer Puck, MD & Mort Cowan, MD, University of California-San Francisco

Ask the Medical Expert Seminar
Drs. Cheng, Cowan, Puck, Routes, Schiff, Stiehm, Torgerson

Healthcare Reform
Elizabeth Stoltz, Baxter Healthcare

Plasma Collection & Safeguards
Josh Penrod, Plasma Protein Therapeutics Association

Living with Chronic Illness
Donna Marie Meszaros, PhD, Abaris and Apex Behavioral Health Clinics

Youth of all ages participated in fun and educational activities throughout the weekend. From the youngest superheroes learning how to really wash their hands and playing IDF Jeopardy to the teens being challenged with their survivor skills, everyone got involved in the fun.  The IDF carnival was also a huge hit.  However, the best part was the opportunity to meet new friends. IDF Teen Council members helped lead youth program sessions-thanks to these remarkable young people, Isaac Antilla and Courtney and Dustin Palmer.

 Chart toping singer and songwriter, Maree McRae performed for the retreaters and shared her story with everyone on Saturday evening. Maree’s credits include top selling artist of the World Music Fest in Sweden and with her new release, Urgency, made the Top Ten National Adult Contemporary Radio Spot with her single, Breeze.

 Of course, none of this could be possible without our generous sponsors.  Much appreciation goes to Baxter Healthcare, CSL Behring, IgG America/ ASD Healthcare, Octapharma, Talecris Biotherapeutics, and Walgreens-Ig Therapy Program for their support.

 The IDF Retreat participants had an amazing time, as evidenced by these comments!

  •  “I can’t thank you enough—for the first time I am feeling that I am not alone
  • “I want to thank everyone for the time and effort put into this amazing weekend.  Our entire family benefited from this and had a great time doing it.  Thank you does not seem an adequate way to express our gratitude.”
  • “So valuable—thank you to the medical staff and IDF for making this possible”
  • “I immensely enjoyed this retreat.  Very empowering.  Thank you”
  • “This was great to attend, to interact with others, and that our child was able to meet people/kids that also have this condition”

 Please add your voice by COMMENTING below about your time at the Retreat.  Also, check out the calendar of events to find out about more exciting activities from IDF! http://www.primaryimmune.org/IDFCalendar/default.htm

Let us know if you are involved in any Community In Action in your area!  Comment or fill out the Contact form at the top of the page to have your story told in a future blog post.

Posted in Community, Education, Family, Patients, Uncategorized.

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IDF Teen Escape – Bloomington, MN

Teens Escaped the weekend of July 16 to Bloomington, MN where they enjoyed a fun weekend with friends while learning about their Primary Immune Deficiency Diseases! Teens, young adults and parents all participated in interactive sessions throughout the weekend including:

  In Tune with Your Immune System
Presenters:  Tamara Pozos, MD, PhD, Children’s Hospital of Minnesota & Jason Raasch, MD, Midwest Immunology

Treatment Options for PIDD
Presenter:  Laura Hoyt, MD, Children’s Hospital of Minnesota

Insurance:  What is it?  Why do I need it?  How do I get it?
Presenter:  Frank Quintieri, Baxter Healthcare

Taking Control of Your Healthcare
Presenter:  Kristin Epland, FNP-C, Midwest Immunology

Taking Control of Your Life at Home and in School
Presenters: IDF Teen & Young Adult Council Mentors

Keeping in Touch – Common Ground
Presenter:  Elizabeth Ferguson, IDF Staff

 In addition to participating in sessions, teens and young adults had plenty of time to meet others and make lifelong friends.  An outing to the Mall of America to play mini golf and enjoy rides at Nickelodeon Universe was a huge hit.  More than a few were doused with water on the log ride!

 Teen and young adult attendees had a fabulous time as evidenced from these comments about the Escape:

  • This was my first time attending the event, and I really enjoyed it!  I hope to attend many more of these.  I liked it!  Overall great experience!
  • The Council is amazing!
  • Really cool!  I will be going to more!

 While their teens and young adults were busy, parents had their own sessions to attend.  Parents participated in the following sessions:

Growing Up with PIDD
Presenters:  Brian Rath & Elizabeth Hart, IDF Teen & Young Adult Council Mentors

Empowering Your Teen to Take Control of Their Healthcare
Presenter:  Ralph Shapiro, MD, Midwest Immunology

Insuring Your Teen
Presenter:  Frank Quintieri, Baxter Healthcare

Roundtable Discussion
Presenters:  Ralph Shapiro, MD, Jason Raasch, MD, Kristin Epland, FNP-C, Midwest Immunology

 Parents had this to say about the IDF Teen Escape:

  • Extremely knowledgeable presenters, material presented in very easy to understand manner, Great ability to empathize with families/kids
  • Really great to hear life stories from mentors/Council and talk with other parents
  • Thanks! This is an awesome thing to do for our kids and their parents.
  • We are jumping up and down we are so excited!!  Thank you so much!

  Thanks go to our Teen and Young Adult Council members:

Isaac Antilla
Joey Grecek
Jordan Kloker
Brittany Mathews
Kaitlyn Mosely
Courtney Palmer
Tiffani Pekkala
Jerry Shorten

Mentors:
Brian Rath & Elizabeth Hart

 Thanks also to Baxter Healthcare for sponsoring this fabulous weekend!

 Keep checking back on the post for picture updates! 

Who is ready for the next Teen Escape in Atlanta, GA November 13-14?!  Post some COMMENTS sharing your experience from this Teen Escape and plans to attend in November!

Posted in Community, Education, Teen Escape.

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IDF Retreat in Rye Brook New York

The IDF Retreat in Rye Brook New York, held the weekend of June 25, was an extraordinary event! Over 200 attendees from 17 states enjoyed the beautiful Doral Arrowwood Conference Center as they had the opportunity to meet and become acquainted with other patients and family members who live with primary immunodeficiency diseases.

There were opportunities for all ages to learn and have fun. The presenters were amazing- expert immunologists and experienced professionals who volunteered their time and knowledge to provide the most up-to-date and authoritative information on medical and life management issues. Thank you to Shradha Agarwal, MD, Mount Sinai School of Medicine; Francisco Bonilla, MD, PhD, Boston Children’s Hospital; Rebecca Buckley, MD, Duke University Medical Center; Kym Kilbourne, PPTA; David LaRosa, MD, University of Pennsylvania, School of Medicine; Heather Lehman, MD, Women and Children’s Hospital of Buffalo; Debra Sedlak, CP  NP, Duke University Medical Center; Becky Wang, MA, LLPC, Private Practice Therapist; and Meredith Zerbe, Baxter Healthcare.

There were youth activities for all ages, both fun and educational. From the youngest learning how to really wash their hands to tweens playing “IDF Jeopardy” and teens being challenged with their “survivor skills”, everyone got involved. All enjoyed the carnival, but probably the best part was the opportunity for everyone to meet and get to know their peers. IDF Teen Council members helped lead youth program sessions-thanks to these remarkable young people, Isaac Antilla, Jordan Kloker, Brittany Matthews, Dustin Palmer and Karissa Ybarra.

Two talented volunteers lead the entertainment Saturday evening. Stephanie Bush performed several of her own songs and joined in with Bill Hindin, our piano man that night. Bill presided over an old-fashioned sing-a-long and guided the group through some old favorites. Who knew the IDF community were such great singers?

Of course, none of this could be possible without our generous sponsors. Much appreciation goes to Baxter Healthcare, CSL Behring, IgG America/ ASD Healthcare, Octapharma, Talecris Biotherapeutics, and Walgreens-Ig Therapy Program for their support. We also want to recognize Bio Rx and Coram for supporting our exhibit hall.

Here are some quotes we received from IDF Retreat participants. Please add your own COMMENTS and share your experience!

“This was a great learning experience for our family. Our daughter got to know other teens with PIDD. Had a great time and enjoyed the retreat.”

“This event was important to learning how to live better, and be more proactive in our own treatment and options.”
“Conference was wonderful and energizing. We’re leaving with new information and new supports/friends! Location and center were perfect. Our kids really had a great time and learned lots!”

“This conference is an unexpected joy and reward! I don’t feel so alone anymore. Thank You!”

“Thank you for the amazing ability to network and interact with those who treat and research in the field. Thank you for all the great food and activities. Always educational!”

            “Best One Ever—Thank You!!”

Sounds like it was an amazing time for everyone!!  Now who is going to San Francisco in August??

Posted in Family.

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IDF Volunteers Bring Important Issues to their Home States!

Volunteers Venture out on their own Advocacy Days for IVIG Access!

Holli Jo “HoJo” Bess of Indiana met with staff from Congressman Barron Hill’s office to tell her story and gain support for the Matsui IVIG demonstration project bill. Holli Jo reports that individuals in the meeting were very emotionally affected by her story and that she fully expects the Representative to sign on as a co-sponsor of the bill!

Dana Currie of Maine was so disappointed with her inability to attend the IDF Advocacy Day in April that she decided to seek out appointments with her legislators and have her own Advocacy event!  Dana has appointments to meet with staff of Sen. Snowe and Sen. Collins and with Rep. Michaud to discuss S 701/ HR 2002 and the Matsui bill in her home state. 

These are great ways to bring the message of IVIG access home (literally)!

IDF Volunteers take Action on SCID Campaign!

As many if you are aware, the Department of Health and Human Secretary Kathleen Sebelius announced the addition of Severe Combined Immune Deficiency (SCID)-commonly known as bubble boy disease–to the core panel of disorders for which newborns in the United States are screened! 

 This is wonderful news as early detection of this disease can mean a vast improvement in the quality of life for individuals with SCID.  In fact, without early treatment many will not survive.  

 Some of our volunteers are taking the reins on this issue by working to try to make SCID Newborn Screening the standard practice in their home states. 

 Joanna Tierno has made contact with the New York screening lab and is distributing materials on SCID newborn screenings to physicians’ offices in order to inform physicians about the benefits of screening infants for this disease.  She is also planning to contact her state representatives about the proposed NY legislation that would include SCID among the standard diseases for which newborns are screened. 

 Debbie Kloker is looking into who to contact and the steps needed to take in order to get SCID on the panel of diseases for which newborns are screened in Oklahoma. 

  If you want to learn more about SCID or the SCID Campaign, please check out the IDF website.  (http://www.primaryimmune.org/advocacy_center/scid/scid_newborn_screening_initiative.asp

This is all very admirable and needed work!  Hooray for IDF volunteers!  ~~Cheers and rowdy applause!~~

Please share if you are engaged in any grassroots advocacy of your own with SCID, IVIG Access, or any other PIDD issue!

Posted in Community.

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IDF Advocacy Day 2010 ~ UPDATED 5/17/10

Advocacy Day UPDATE on Co-Sponsors! – 5/17/10

Thanks to all of the amazing Advocacy Day volunteers who spoke with legislators and then followed up with emails requesting sponsorship of HR 2002 and S 701 … *drum roll* … SIX new co-sponsors have signed on to S 701/ HR 2002 since Advocacy Day!

Here is a list of the sponsors who have signed on since Advocacy Day and the dates they became official sponsors.

HR 2002                                                                                  S 701

Rep Green, Gene [TX-29] – 5/4/2010                         Sen Cardin, Benjamin L. [MD] – 5/13/2010

Rep Upton, Fred [MI-6] – 5/4/2010

Rep Melancon, Charlie [LA-3] – 5/4/2010

Rep Moran, Jerry [KS-1] – 5/12/2010

Rep Schauer, Mark H. [MI-7] – 5/4/2010

 We have also received word that Congressman Chris Van Hollen has agreed to be an original co-sponsor on Congresswoman Matsui’s bill!  This is wonderful news as Congressman Van Hollen is the Assistant to the Speaker and one of the highest ranking members of the House.  What a wonderful ally for IDF in the fight for access to IVIG treatment!

Orginal Post:

IDF Advocacy Day is here. IDF Volunteers are spreading the word to their Senators and Representatives that Medicare beneficiaries with primary immunodeficiency diseases need access to IVIG therapy – especially in the home. We need Congress to fix the Medicare IVIG access problem and to ask for studies of reimbursement issues that adversely affect access to care for IVIG.

Leave your comment and read about others’ experiences. It is an exciting day on Capitol Hill! Please send your photos to idf@primaryimmune.org, and we will post them here:

Posted in Awareness.

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April 2010

April is Primary Immunodeficiency Awareness Month

IDF volunteers from across the country contacted their Governors’ offices to get State Proclamations declaring April to be Primary Immunodeficiency Awareness Month. Thank you to the following IDF Volunteers! (Click on the underlined names/states to view the proclamations)

Carol King – Arkansas
Steve Fietek – Arizona
Judy Kozulak – Delaware
Amy Walsh – Illinois
Kimberly Buck – Louisiana
Dana Currie – Maine
Dave Hanus – Nebraska
Bill Hindin – New York
Karen Rubin-Jablow – Ohio
Cathy Palmer – Oklahoma
Ken Bass – Oregon
Diane Buckberg – Tennessee
Sami Jankins – Wisconsin

We are anxiously waiting to hear from more states to add to this list!

Advocacy Channel
The IDF Advocacy Channel has a new story! Barbara Ballard from Virginia talks about the importance of Newborn Screening for SCID. CLICK HERE to watch the video on the IDF Advocacy Channel.

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

State Efforts
IDF Volunteers work tirelessly to create change in their home states. Jenny Gardner had the opportunity to meet with Marco Rubio, candidate for U.S. Senate in Florida, to discuss the special needs of the PIDD community…Kimberly Buck attended a luncheon hosted by Louisiana Governor Jindal in recognition of state proclamations, including the one announcing April as PIDD Awareness Month in Louisiana…and Susan Giorgi-Branch met with the Rhode Island Newborn Screening Board to plead the case for newborn screening for SCIG.

If you have met with your state legislators, Members of Congress or other policy makers or their staff, please let us know! You can email us at advocacy@primaryimmune.org!

Posted in Awareness.

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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!

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