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Jake Is Super Hero Strong

Jake receives his immunoglobulin therapy

Five-year-old Jake loves the Avengers. He tells everyone that he is like the Hulk because he receives “special blood to make him strong.” And Jake does receive special treatment to make him strong like a super hero. He was diagnosed with Specific Antibody Deficiency in December 2012, and he now receives immunoglobulin (Ig) therapy to keep him strong.

From the age of 18 months old, Jake had 30 infections all requiring steroids and antibiotics, five bouts of pneumonia, adenoidectomy and sinus surgery before finally being diagnosed. It took a long time to diagnose him because his IgG levels were low 620′s but not low enough to be immune deficient. He also kept losing the antibodies to vaccines, which is how he was eventually diagnosed.

“It’s been a long, frustrating road, but my son is so tough,” says Jake’s mom Megan, “He is extremely bright and our brilliant immunologist’s best and youngest patient.”

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Posted in Community, Family.


IDF Teen Council Member Bryan Jirsa Promotes Awareness

IDF Teen Council Member Bryan Jirsa of Joppa, MD promoted National Primary Immunodeficiency Awareness Month in his community. The busy high school senior, who was diagnosed with Common Variable Immune Deficiency Disease in 2010, wanted to educate others about these diseases.

Bryan Jirsa and his mom Karen accept the proclamation from Harford County Executive David Craig.`

Bryan began by receiving a proclamation from Harford County Executive David Craig, declaring April 2013 Primary Immunodeficiency Awareness Month. He then spoke to his Public Health class at Fallston High School about primary immunodeficiency diseases.

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Posted in Awareness, PIDD Awareness Month, Volunteer.

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Awareness Month Meetings: Little Rock, Omaha and Winston-Salem

Presenters at the IDF Patient Education Meeting in Omaha, NE included (from left) Brett V. Kettelhut, MD, Roger Kobayashi, MD, and James L. Friedlander, MD.

The Immune Deficiency Foundation (IDF) hosted three Patient Education Meetings during National Primary Immunodeficiency Awareness Month this April.

Patient Education Meetings, created and developed by IDF with the help of local volunteers and healthcare professionals, are designed for individuals and family members. By traveling to regions throughout the country, IDF can further promote awareness and offer invaluable information about the treatment and management of primary immunodeficiency diseases from healthcare and life management experts.

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Posted in Awareness.

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IDF Teen Council Member Emma Bozarth Featured on Local News

This April, Emma Bozarth, a member of the Immune Deficiency Foundation (IDF) Teen Council, promoted awareness in her hometown of Macomb, Illinois with the help of her family and her softball team. The local TV station featured her story.

Click here to watch.

Way to go, Emma!

Posted in Awareness, Volunteer.

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Marcia Boyle Promotes Awareness Month on Baltimore TV Station

Marcia Boyle, President & Founder of the Immune Deficiency Foundation (IDF), promoted National Primary Immunodeficiency Diseases Awareness Month on Baltimore TV station WBAL-TV 11 on Sunday, April 28, 2013.

Click here to view the segment.

Posted in Awareness.


Staten Island Resident and IDF Volunteer Promotes Awareness

Joanna Tierno is an active Immune Deficiency Foundation Volunteer, but in the wake of Hurricane Sandy, the Staten Island resident has also become an advocate for her community that was hit hard by the super storm. This April, with the Midland Avenue Neighborhood Relief, she participated in blood drives to spread awareness of primary immunodeficiency diseases as well as to bring attention to the ongoing struggles of her community. She was featured on the local news and in the advertisements for the NYC Blood Center.

Thank you for all your work, Joanna!

Click here to learn about volunteering for IDF.

Posted in Awareness, Volunteer.

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Volunteerism and Primary Immunodeficiency

By William Hindin, IDF Volunteer

A number of years ago, I was the pianist/entertainer on a luxury train, which offered one-week trips across the country, like a cruise. I played, sang and entertained the guests every night before and after dinner.

On one trip, a little elderly lady would sit next to me after dinner and we would chat. She would request “Memory” from the musical CATS, sometimes several times a night. Now, I must tell you that most musicians just hate that song (don’t ask why) and every time she would request it, I would roll my eyes, grit my teeth and reluctantly play the song for her.

On the final night of the trip, there was a cocktail party for the guests, and when everyone was present, this little lady got everyone’s attention. She proceeded to thank us for the wonderful week and explain that she was terminally ill with a short time to live. She told us that we had made her last trip of her life so very pleasurable and wonderful. Needless to say, this stunned us all, as we had no idea what she was facing.

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Posted in Awareness, Volunteer.


IDF Teen Escape Is “Sooooooo Fun”

Teens and their parents enjoyed the Immune Deficiency Foundation (IDF) Teen Escape, held in Orlando March 16-17. One teen said, “It was sooooooo fun!”

Teens living with primary immunodeficiency diseases, along with their parents, traveled from seven states to connect with others and have a good time, but more importantly they had the opportunity to learn the latest information from healthcare and life-management professionals, including:

  • Vivian Hernandez-Trujillo, MD – Miami Children’s Hospital
  • Carla Duff, CPNP, MSN, CCRP – University of South Florida
  • William Blouin, MSN, ARNP, CPNP – Miami Children’s Hospital
  • Jodi Taub, LCSW – Private Practice

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Posted in Awareness, Family, Patients, Teen Escape.


IDF Celebrates National Volunteer Week

In honor of National Volunteer Week, April 21-27, 2013, the Immune Deficiency Foundation (IDF) recognizes our dedicated volunteers! IDF has a nationwide network of volunteers committed to increasing awareness of primary immunodeficiencies in their local communities. Many serve as peer support volunteers to offer encouragement and understanding to others as they live with a primary immunodeficiency disease. Others provide information on local resources, host educational meetings, advocate for public policy, and often organize fundraising events throughout the country. Thank you to each and every volunteer for sharing your time and talent—you are absolutely vital to the work of IDF!

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Posted in Volunteer.


April is National Primary Immunodeficiency Awareness Month!

Join IDF to promote awareness of primary immunodeficiency diseases in your community this April! If you live with a primary immunodeficiency disease or have a significant relationship with someone who is affected, you know how important it is to raise awareness and understanding about these diseases. This is a perfect opportunity to educate and inform people and hopefully, this knowledge will lead to early diagnosis and appropriate treatment.

Click here for a list of ways to help you increase awareness. Have fun, be creative and get the word out!

Posted in Awareness, PIDD Awareness Month.

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