IDF Public Policy Manager Emily Hovermale

PIDTC is the Primary Immune Deficiency Treatment Consortium is part of the National Institutes of Health (NIH) Rare Diseases Clinical Research Network (RDCRN) and consists of 13 major centers in North America whose shared goal is to improve the outcome of patients with rare, life threatening, inherited disorders of the immune system.

IDF volunteer and co-founder of SCID, Angels for Life Foundation Heather Smith

Olivia Trueb and Dr. Daniel G. DeMerrel at IDF's Patient Education Meeting in Portland, OR

Portland, OR served as the backdrop for the latest Immune Deficiency Foundation (IDF) Patient Education Meeting, held Saturday, April 21. At the end of the day, positive feedback filled the room and the evaluation sheets. Patients with primary immunodeficiency diseases (PIDD) and their family members clearly enjoyed the information shared at the meeting.

Kathy Antilla, IDF Director of Education & Volunteer Development, spoke about being your own advocate through IDF. Dr. Daniel G. DeMerell of Asthma, Allergy and Dermatology Associates, PC discussed general care of PIDD. Dr. DeMerell along with Dr. Robert Lawrence of Interstate Medical Office East and Dr. Joseph M. Hassett of AAIM Care, LLC fielded questions from patients and family members during a question and answer session. Kimberly Jones, RN of Baxter Healthcare described how the Affordable Care Act relates to patients with PIDD. The day wrapped up with breakout sessions for each group: parents, patients, teens and family members. IDF volunteers helped the day run smoothly, including Ken Bass, Cathy Davis, Bette Jo Poser and Tiffani Pekkala.

Out of the 49 in attendance, 56% had never attended an IDF meeting, which shows IDF is reaching more and more people. These positive Portland folks said they are looking forward to attending more IDF events in the future! Click here to view IDF’s upcoming events.

IDF volunteer Joanna Tierno of Staten Island speaks at her Community Council meeting April 18, 2012.

Joanna Tierno of Staten Island, NY, one of IDF’s dedicated volunteers, is pounding the pavement for the Immune Deficiency Foundation (IDF), working with many people in her community to promote Primary Immunodeficiency Diseases (PIDD) Awareness Month.

Joanna was featured in episodes of a local cable TV show in which she explained PIDD and IDF’s THINK ZEBRA! fundraising campaign. She also demonstrated an immunoglobulin infusion, which is a treatment option for those with PIDD.

IDF volunteer Joanna Tierno with 122nd Precinct Community Council President David Beal (left) and Police Captain Joseph Veneziano.

On April 18, she spoke to her Community Council about her life with PIDD and distributed IDF literature.

In addition, Joanna requested and ultimately received an official proclamation from the City Council of New York, declaring April PIDD Awareness Month.

Thank you for educating your community about PIDD, Joanna! You are inspiring!

IDF volunteer Bridget Threadgill of Cullman, Alabama received the city’s proclamation that April is PIDD Awareness Month from Mayor Max Towson April 2, 2012.

Patients with primary immunodeficiency diseases (PIDD) are working to make April officially PIDD Awareness Month where they live.

On April 2, IDF volunteer Bridget Threadgill of Cullman, Alabama obtained a proclamation from Mayor Max Towson recognizing April as PIDD Awareness Month. Carol King, a patient with PIDD, received a similar proclamation from her home state of Arkansas.

IDF volunteer Joanna Tierno received a proclamation from the City Council of New York. Dr. Prem Menon of the Asthma , Allergy and Immunology Center in Baton Rouge, LA received a proclamation from the State of Louisiana.

Thank you for making Primary Immunodeficiency Diseases Awareness Month official!

State of Arkansas Proclamation

State of Louisiana Proclamation

IDF volunteer Joanna Tierno receives a proclamation from the City Council of New York from Council Members James Oddo and Vincent Ignizio.

Celebrations kicked off April 2 at a staff breakfast with a showcase of zebra attire, from a zebra tie to zebra nail art; the staff member who displays the most spirit will be recognized at the end of the month with the Zebra Spirit Award. To promote IDF to our neighbors, staff volunteers set up a table in the lobby of IDF’s office building in Towson, MD and distributed materials April 4.

IDF staff celebrate PIDD Awareness Month, April 2012.

The creative minds of IDF competed in the Office Decoration Contest April 13, which challenged staff to execute an original decoration theme that celebrated PIDD Awareness. Four teams competed, and each developed very unique themes. Team 1 recreated the kitchen table where Marcia Boyle, President and Founder, first created IDF. Team 2 took inspiration from Dancing with the Stars for Dancing with the Zebras. Team 3 illustrated the journey from diagnosis and getting treatment to leading a healthy fulfilling life, including attending prom and taking vacations. Team 4’s Election 2012 theme earned them first place with clever decorations and a “Presidential” video: http://youtu.be/8yfyg3wBqBo.

The month’s festivities will wrap up with a Game Day April 25 and IDF Employee Strikes for Stripes April 30. For Strikes for Stripes, employees are raising funds for the bowling event by taking the Zebra Challenge and creating their personal fundraising pages through Crowd Rise. For casual Fridays, staff members are asked to make a donation to IDF when they dress casually. Anyone can Take the Zebra Challenge and raise funds for IDF! Click here for more info.

We encourage our community to share what they are doing for PIDD Awareness Month. We want to keep the momentum going!

IDF Office Decoration Contest - Team 1 recreated Marcia Boyle’s kitchen table, where she started IDF. The team then surrounded the table with characters from IDF’s children’s book “Our Immune System.”

IDF Office Decoration Contest - Team 2’s Dancing with the Zebras included celebrities dancing for PIDD Awareness.

IDF Office Decorating Contest – Team 3 showed how patients can have a healthy, fulfilling life, including attending celebrations like prom.

IDF Office Decoration Contest - Team 4’s Election 2012 theme featuring Uncle Sam posters and much more earned them first place.

Great meetings that were held recently throughout the country include – the Delaware Get Connected Meeting with 12 attendees on March 10, the Operation Outreach in Dallas on March 24 attended by 75 people – 92% of whom had never attended an IDF event before – and the Patient Education Meeting in Charlotte, NC on March 31 with 40 eager participants.  These events provide the perfect opportunity to individuals impacted by primary immunodeficiency diseases to meet each other and share ideas.  The Operation Outreach and Patient Education meetings have the added bonus of providing medical information from local experts in immunology.  IDF is expanding our reach throughout the country with more meetings every year, so check out our Calendar of Events to find a local event near you!

Not convinced?  Just read what some of the attendees of our events have to say about them –

Awesome information! Very thankful for the invite.

I would love to attend another meeting, all the people who were involved were great!

I was truly floored by the wealth of information available and shared. The IDF Rep presented a great overview and was a great start to the day. The physicians were incredible.

Helps me feel less isolated and let me know about more that was available.

Thanks for hosting this meeting.  I hope you will come back to Dallas again.  It is invaluable to meet others and learn more about PIDD.

Thank you for all of the great discussion and hospitality, IDF Community!  We hope to see you all at an event soon.

Amy also gave out IDF Is it Just an Infection? cards and the hosts agreed to mention IDF and PIDD awareness on shows throughout the month of April.  They also told Amy that she could come back or call in with any updates about PIDD related issues.

To listen to Amy’s interview, click on the link below.

http://idfcommunityinaction.org/media/amy-walsh.mp3

Join with IDF, Amy, and our volunteers across the country to promote awareness of primary immunodeficiency diseases in your community.

If you live with a primary immunodeficiency disease (PIDD), or have a significant relationship with someone who is affected, you know how important it is to raise awareness and understanding about these diseases. Awareness Month is a perfect opportunity to educate and inform people about PIDD and hopefully, this knowledge will lead to early diagnosis and appropriate treatment.

Check out the Primary Immunodeficiency Awareness Month 2012 webpage for more information about how you can help create awareness of PIDD.  Have fun, be creative, and get the word out!

http://primaryimmune.org/primary-immunodeficiency-awareness-month

Join with IDF, Jessica, and our volunteers across the country to promote awareness of primary immunodeficiency diseases in your community.

If you live with a primary immunodeficiency disease (PIDD), or have a significant relationship with someone who is affected, you know how important it is to raise awareness and understanding about these diseases. Awareness Month is a perfect opportunity to educate and inform people about PIDD and hopefully, this knowledge will lead to early diagnosis and appropriate treatment.

Check out the Primary Immunodeficiency Awareness Month 2012 webpage for more information about how you can help create awareness of PIDD.  Have fun, be creative, and get the word out!

Click here for the complete story and photos on the Penguins’ website.

Thank you to the Bylsma Family and the Pittsburgh Penguins for your support of IDF!

Avery Medellin being interviewed for News 4 WOAI

IDF volunteer Melody Medellin helped organize and promote a wonderful fundraiser and awareness campaign in her home state of Texas.  Zumba for Zebras took place on Sunday, February 26 and included not only a two-hour Zumba class, but also a chance to win some fun, free giveaways.  Melody was helped  by her son, Avery who did a television interview for News 4 WOAI.  Avery explained to the audience what life was like before being diagnosed and treated for PIDD and how much his life has improved since diagnosis and proper therapy.

Zumba for Zebras was a resounding success with at least 500 participants!  Thank you to Melody and Avery and to all the zebras who came out to support IDF!

You can learn more about the Medellins’ efforts and Zumba for Zebra at   http://www.woai.com/content/news/newslinks/story/Have-a-Recurring-Infection-Your-Child-Could-Have/JE7fcu6hakartyovlK6wlg.cspx

Be sure to watch the video!

Please let IDF know if you are involved in any Community in Action activities in your community. Comment below or fill out the Contact form at the top of the page to have your story featured in a future blog post.  If you are interested in becoming an IDF volunteer, what are you waiting for?  Visit the website https://www.primaryimmune.org/you_can_help/volunteer.asp