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IDF Community Makes Connections

The IDF Get Connected Meeting in Minneapolis, MN

IDF Get Connected Meetings are smaller group meetings that volunteers organize throughout the country for patients and family members to meet and share ideas.  IDF volunteer Tim Waskerwitz started organizing Get Connected Meetings in Huntsville, AL to meet every 6 weeks.  The last meeting was held on January 14 with 10 people in attendance.  The group generated a lot of great conversation and everyone is enjoying building on the sense of community for the PIDD patients of Alabama. The group also plans to visit some local plasma centers in the upcoming weeks.

Another IDF Get Connected Meeting was held in Minneapolis, MN on Saturday, January 21st.  IDF volunteer, Patricia (Pixie) Pixler, worked with IDF to coordinate the meeting.  It was attended by 14 people and scheduled at 10 AM to noon.  It was such a wonderful experience that some attendees didn’t leave until 1:30!  One family drove 2 and a half hour to attend.

Patients at the Minnesota meeting had an overwhelming positive experience. Comments included:

  • It was great to meet some new people, sit around, and really dig deeply into ideas and common experiences.  Thanks for taking the time to set this up for us.
  • It was wonderful!  Very helpful to connect with other parents!  Supportive and encouraging!
  • Thank you so much for having this.  I am so happy to have met with others with similar diagnosis and similar stories.

 

Check out an IDF Get Connected Meeting in your area!  Meetings currently on the calendar are

Towson, MD – February 11
Kalamazoo, MI – February 18
Madison, AL – February 25
Newark, DE – March 10

Go to the IDF Calendar of Events for more details. http://primaryimmune.org/event-calendar

 

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By IDF_Emily – January 26, 2012

IDF volunteer gives thanks in the New Year

IDF volunteer John Guntkowski visited the CSL Behring Plasma Center in Port St. Lucie, FL on Wednesday, January 18, 2012 as part of the IDF Plasma Center Program.  The purpose of this program is to create awareness about primary immunodeficiency diseases and to show the relationship between patients, donors and employees. Donors and employees see the important role they play in the lives of patients and the lifesaving medications that are produced. Patients and family members gain a better understanding of the importance of plasma donation, and see firsthand the regulations that are in place to produce the safest, highest quality plasma for their lifesaving medications.

IDF volunteer John Guntkowski (striped shirt) at the CSL Behring Plasma Center in St. Lucie, FL

John toured the center and had the opportunity to thank the staff and donors for their lifesaving commitment to patients and explain how IgG therapy impacts his life.

The trip to CSL’s Plasma Center was John’s first plasma center visit.  For him it was not only an educational experience but also a time for John to share and give thanks.  From John’s perspective, “I got a little choked up when I talked to the staff and donors about ‘my story’ when it hit me with everything they do to help people only with  primary immunodeficiencies, but many other patients who need plasma for other various reasons.”  The experience has inspired John to plan regular trips to speak with more donors at the Plasma Center.

Please consider volunteering to visit a center and express gratitude for the donors and staff who make your Ig infusions a possibility! If you would like to be a volunteer in the IDF Plasma Center Program, please fill out the form at http://primaryimmune.org/volunteer

Thank you to all of the volunteers and plasma centers that are participating in the program throughout the country.

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By IDF_Emily – January 23, 2012

IDF closes out a jam packed season of Patient Education Meetings in St. Louis and SLC

IDF hosted another twofer Saturday with Patient Education Meetings in St. Louis and Salt Lake City on December 10.   This eventful Saturday featured the last two patient meetings before the New Year!   IDF was in both places to educate the community about primary immunodeficiency diseases and provide networking opportunities for patients and family members. Each meeting featured local experts in immunology addressing the treatment and management of primary immunodeficiency diseases with presentations and question and answer periods.

Ask the Experts session with Drs. Knutsen, Borts and Debnath in St. Louis

Experts at the St. Louis meeting included Dr. Alan Knutsen of St. Louis University School of Medicine; Dr. Nick Debnath of Washington University School of Medicine; and Dr. Michael Borts of Allergy, Asthma, & Sinus Care Center. Fifty patients and family members were in attendance, many of whom had never before attended an IDF event. The experience was overwhelming positive for the participants. As one patient expressed, “This IDF meeting was very educational and significant to my wife and me.  We look forward to future events in St. Louis.”  USIDNet was also at hand to consent patients in St. Louis who wished to be a part of the USIDNet Patient Registry. The Registry is a database designed for the advancement of research for primary immunodeficiency diseases. Its success depends on patients and families who are willing to submit their medical information to be combined with thousands of others in order to establish this valuable data set.

The meeting in Salt Lake City was attended by 35 individuals, who were all very excited and engaged to be a part of the conversations. The wonderful trio of Dr. Adi Gundlapalli, Dr. John Bohnsack, and Dr. Karen Chen all of the University of Utah School of Medicine spoke to the group about PIDD and answered treatment questions.  The patients were so hungry for information about PIDD that the Ask the medical Experts session went through lunch and the doctors continued answering questions until almost 1:30pm!

Both meetings featured person to person discussion session for patients and family members only. This afforded participants with the opportunity to speak one-on-one with others going through similar experiences and share support and resources.

IDF Director of Education and Volunteer Development Kathy Antilla (center) with IDF volunteers Tammy Allard and Karen Wheat at the St. Louis meeting

Once again, it is important to note that none of these meetings would be possible without the help of our amazing volunteers. Thank you Karen Wheat, Tammy Allard, and Laura Sievert in Missouri and Jill Heaps in Utah! Your help is always appreciated.

Just because this is the last Patient Education meeting of the year, don’t think for a second that we don’t have a ton of wonderful events already in the works for next year! Keep checking back on the IDF Calendar of Events to find an upcoming meeting in your area.

To learn more about USIDNet and the USIDNet Patient Registry, please visit http://primaryimmune.org/patients-and-families/usidnet-patients

Have the Community in Action bug? Comment below or fill out the Contact form at the top of the page to have your story of volunteer activities featured in a future blog post.  To learn more about ways you can get involved, please visit the website at www.primaryimmune.org

 

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By IDF_Emily – December 15, 2011

IDF occupies LA and Philadelphia

What do the City of Brotherly Love and sunny Los Angeles County have in common? No, not that Will Smith owns houses in both locations. Philadelphia and Cerritos, CA were both hosts to IDF Patient Education Meetings on Saturday, December 3, 2011! This busy Saturday saw IDF in both places to educate the community about primary immunodeficiency diseases and provide networking opportunities for patients and family members. Each meeting featured local experts in immunology addressing the treatment and management of primary immunodeficiency diseases with presentations and question and answer periods.

The Ask the Medical Experts panel at IDF's Patient Education meeting in Cerritos

Experts at the Cerritos meeting included Dr. Joseph Church, Children’s Hospital of Los Angeles; Dr. Sudhir Gupta, University of California, Irvine; and Dr. E. Richard Stiehm and Dr. Marc Riedl, University of California, Los Angeles. One hundred patients and family members were in attendance, most of whom had never before attended an IDF event. The experience was overwhelming positive for the participants. As one patient expressed, “Thank you, thank you, thank you, IDF! Your support makes a HUGE difference in many ways. The information/education, advocacy, patient networking are an invaluable gift to patients.”

 

The meeting in Philadelphia was attended by 65 individuals, many of whom came from surrounding New Jersey and Delaware to hear the expert presentations. The wonderful trio of Dr. Stephen McGeady of Thomas Jefferson University, Dr. Kathleen Sullivan of Children’s Hospital of Philadelphia, and Dr. David LaRosa of the University of Pennsylvania spoke to the group about PIDD and answered treatment questions. USIDNet was at hand to consent patients in Philadelpia who wished to be a part of the USIDNet Patient Registry. The Registry is a database designed for the advancement of research for primary immunodeficiency diseases. Its success depends on patients and families who are willing to submit their medical information to be combined with thousands of others in order to establish this valuable data set.

Dr. Kathleen Sullivan presenting at the IDF Patient Education Meeting in Philadelphia

Both meetings featured person to person discussion session for patients and family members only. This afforded participants with the opportunity to speak one-on-one with others going through similar experiences and share support and resources.
Once again, it is important to note that none of these meetings would be possible without the help of our amazing volunteers. Thank you Kristy Cacucciolo, Nancy Hoffman, Mary Hurley, Richard Low, and Shirley Vulpe in California and Mandy Davis, Terry Halper, and Judy Kozulak in Pennsylvania! Your help is always appreciated.
Please join us at an IDF Patient Education Meeting or other great IDF event in your area! Check out the IDF Calendar of Events for details.

To learn more about USIDNet and the USIDNet Patient Registry, please visit http://primaryimmune.org/patients-and-families/usidnet-patients

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

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By IDF_Emily – December 9, 2011

IDF Maryland Outreach – Operation is a Go!

On Saturday, November 12th IDF was again out and about for an Operation Outreach Meeting, this one in Bethesda, MD home to the National Institutes of Health and Bethesda Naval Hospital where the President goes to get his yearly check-up.  With 65 patients and family members in attendance, the event in Bethesda was the largest IDF Operation Outreach meeting this year! Operation Outreach is a one-day educational meeting that offers educational opportunities for individuals living with primary immunodeficiency diseases.

The meeting provided families and health professionals with an introduction to the Immune Deficiency Foundation, and included activities designed to encourage peer support and networking.  The meeting also featured local clinical immunologists addressing the treatment and management of primary immunodeficiency diseases, insurance reimbursement specialists offering advice and resources, and medical professionals speaking about immunoglobulin therapy:

Welcome & What’s New at IDF
Christine Belser – Immune Deficiency Foundation

Overview of Primary Immunodeficiency Disease
Sergio D. Rosenzweig, MD, PhD – National Institute of Allergy and Infectious Diseases

Immune Globulin Replacement Therapy:  Patient Basics
M. Elizabeth Younger, CPNP, PhD – Johns Hopkins Hospital

Managing Infections & PIDD
Steven M. Holland, MD – National Institute of Allergy and Infectious Diseases

Ask the Medical Experts
Steven M. Holland, MD
Sergio D. Rosenzweig, MD, PhD
M. Elizabeth Younger, CPNP, PhD

The Affordable Care Act: Current Reform Measures that Help Persons with Chronic Conditions
Lynn Szott, RN – CSL Behring

Following the presentations, participants  had the opportunity to connect with a person-to-person discussion session for patients and family members only.  For some attendees, this was their first opportunity to meet with other individuals affected by primary immunodeficiency diseases and share experiences and information. The participants expressed how much they enjoyed learning new things about IDF and primary immunodeficiency diseases.  One attendee said, “This was the first meeting that my husband was able to attend.  Every meeting that my son and I have attended we have learned something new.  Great Job!”

Thank you to all of the patients and family members and medical experts who helped to make this event such a success especially our IDF volunteers Judy Kozulak, Judy Berrong, and Sharon Walton!  A special thank you goes to CSL Behring who sponsored the event.

Please check out the IDF Calendar of Events for more information about fun and educational events IDF is planning across the country.

Have the Community in Action bug? Comment below or fill out the Contact form at the top of the page to have your story of volunteer activities featured in a future blog post.  To learn more about ways you can get involved, please visit the website at www.primaryimmune.org

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By IDF_Emily – December 7, 2011

Family, and Fun, and Medical Experts… oh my!

The IDF Family Conference Day at the Science Museum of Minnesota in St. Paul on Saturday, November 12, 2011 was the largest Family Conference Day in IDF history!  Attend by 185 individuals, ages 5 and up, coming from 4 states, the Family Conference Day was a HUGE success (with extra emphasis on the HUGE).  While the adults listened to local medical experts present sessions, the youth participated in their own program.  Children and teens enjoyed a live science show, tour of the museum, time in the science exhibits, and other fun activities.

The adult meeting included the following speakers and topics:

Welcome & What’s New at IDF
Katherine Antilla, MAEd – Immune Deficiency Foundation

Managing Sinusitis and Primary Immunodeficiency Disease
Ralph Shapiro, MD – Midwest Immunology Clinic

B Cell & Antibody Production Deficiencies
Laura Hoyt, MD – Children’s Hospitals & Clinics of Minnesota

NBS for SCID Update
Amy Gaviglio, MS, CGC – Minnesota Department of Health

Ask the Medical Expert

Kristin Epland, FNP-C – Midwest Immunology Clinic
Laura Hoyt, MD – Children’s Hospitals & Clinics of Minnesota
Jason Raasch, MD – Midwest Immunology Clinic
Ralph Shapiro, MD – Midwest Immunology Clinic

Caring for the Caregiver for Parents and Family Members
John Seymour, PhD, LMFT – Minnesota State University, Mankato

Ask the Medical Experts session at the 2011 IDF Minnesota Family Conference Day

It was a great opportunity to learn about treatment and disease management.  There were plenty of questions for the ‘ask the medical expert’ session.  USIDNet also participated in the meeting consenting patients who wished to be a part of the USIDNet Patient Registry.  The Registry is a database designed for the advancement of research for primary immunodeficiency diseases.  Its success depends on patients and families who are willing to submit their medical information to be combined with thousands of others in order to establish this valuable data set.

Please join us at an IDF Patient Education Meeting or other great IDF event in your area! Check out the IDF Calendar of Events for details.
To learn more about USIDNet and the USIDNet Patient Registry, please visit http://primaryimmune.org/patients-and-families/usidnet-patients

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.  To learn more about ways you can get involved, please visit the website at www.primaryimmune.org .

 

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By IDF_Emily – December 1, 2011

Cleveland Rocks!

The Cleveland Patient Education Meeting featured presentations from local experts

We all know that Cleveland is home to the Rock and Roll Hall of Fame, but on October 29 the city rocked in a whole different way as 90 patients and family members converged on the Sheraton Hotel for an IDF Patient Education Meeting!   The event had such amazing turnout as the participants came to learn more about primary immunodeficiency diseases and meet with others who live with these conditions.  Luckily, many IDF volunteers were on hand to rock out – I mean help out, and be a part of the success.  Special thanks go to Mark Leventhal, Judie Koeth, Carol Ambosino, Chrissy Lankey who generously lent their time to assist with the meeting!

The meeting featured local experts in immunology addressing the treatment and management of primary immunodeficiency diseases with presentations and question and answer periods.  Speakers and topics included:

Welcome & IDF Update
Colin Seal, IDF Field Representative & Program Specialist

Overview of Primary Immunodeficiency
Melvin Berger, MD, PhD – CSL Behring

Understanding Immunological Testing for PIDD
Robert Hostoffer, DO – Allergy & Immunology Associates

Ask the Medical Experts
Melvin Berger, MD, PhD – CSL Behring
Robert Hostoffer, DO – Allergy & Immunology Associates
Haig Tcheurekdjian, MD – Allergy & Immunology Associates

The speakers were incredible and one doctor even commented that this was some of the best conversation he had participated in about PIDD.  In addition to the fabulous speakers, the attendees also enjoyed a person to person discussion session for patients and family members only.  This afforded participants with the opportunity to speak one-on-one with others going through similar experiences and share support and resources.

Share in the knowledge, connections, and fun that IDF Patient Education Meetings offer!  Join us at an upcoming meeting or other great IDF event in your area! Check out the IDF Calendar of Events for details.

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.  To learn more about ways you can get involved, please visit the website at www.primaryimmune.org .

 

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By IDF_Emily – November 16, 2011

Hope and wine, the perfect pairing

Half of Team Hope, Stef Bush with her husband Ralph at Saturday's Wine Tasting event

Saturday, October 15 IDF volunteers Michelle Fox and Stefanie Bush – nicknamed Team Hope – hosted their 4th Annual “Promise of Hope” Wine Tasting fundraiser for IDF in Lowell, MA.  The night featured international wines, live music, appetizers, live and silent auctions, raffles, and a Halloween Murder Mystery!  Over $5,000 worth of auction items were donated for the evening and with guests encouraged to come in costume, the night was a true celebration for a cause.  Some of the fabulous auction items included tickets to local attractions like the zoo and theater, a spa day, and tickets to see a Boston Bruins hockey game.  The big ticket item ended up being a Beer for a Year package entitling the winner to a case a month of beer for year which ultimately went to the highest bidder for $575!

Between sponsors, donors, live/silent bids, and admission Team Hope raised over $12,000.00 for the Immune Deficiency Foundation! As Stefanie said about the event, “I am so proud to say that we have such a great group of folks who not only ‘get’ what we go through but ‘get’ why we do what we do and support us!” Congratulations to Team Hope for all of their success!  IDF is so grateful to wonderful volunteers like Michelle and Stefanie who put so much effort into making things better for the whole community.  Save the date for their 5th Annual Fundraiser, September 29, 2012.  Next year the event will be the Promise of Hope Beer Tasting.  Based on the success of this year’s event, you will not be disappointed!

Team Hope's Michelle Fox (right) enjoying the celebration with attendee Erin Shapleigh

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.  To learn more about ways you can get involved, please visit the website at www.primaryimmune.org

 

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By IDF_Emily – October 18, 2011

Patients build connections with IDF and each other

IDF President & Founder Marcia Boyle with volunteer Judy Kozulak and IDF Field Rep Colin Seal

Feelings of isolation often accompany the everyday effects of living with a primary immunodeficiency disease. Frequently, those feelings stem from the perception that no one understands what you are going through. Sometimes you simply need to talk freely about how you’re feeling.  That is what  IDF Get Connected Meetings offer.  These meetings give patients the opportunity to join with peer support volunteers and with other patients and family members going through similar experiences.

On September 24, 2011, IDF held a Get Connected meeting for patients and family members in the Maryland area to get together and share ideas.  The meeting was held in the IDF office in Towson and IDF President and Founder Marcia Boyle attended and shared her experiences along with her son, John Gordon Boyle.   Attendees were excited about the opportunity to speak one on one with Marcia.

One individual commented, “Really enjoyed hearing from Marcia and her son about how IDF got started and how exciting it is to see where it is today!”  Another participant remarked, “It was great for my son to meet others with PIDD for the first time.”

You can hear Marcia tell the story of how IDF was formed and how it has  flourished into an amazing patient community  by watching the Immune Deficiency Foundation 30th Anniversary video on the IDF Channel.

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.  To learn more about ways you can get involved, please visit the website at www.primaryimmune.org

 

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By IDF_Emily – September 28, 2011

I got more answers in the last several hours than I have in the last few years!

Patients and Family Members at the IDF Patient Education Meeting in Birmingham

Patients and family members affected by PIDD in Denver, CO and Birmingham, AL shared their weekend with IDF on September 17, the second Saturday in a row featuring multiple IDF Patient Education Meetings across the country.  This busy Saturday saw IDF in both places to educate the community about primary immunodeficiency diseases and provide networking opportunities for patients and family members.  Each meeting featured local experts in immunology addressing the treatment and management of primary immunodeficiency diseases with presentations and question and answer periods.

Experts at the Birmingham meeting included Dr. T. Prescott Atkinson, University of Alabama; Dr. Adina Kay Knight, Alabama Allergy & Asthma Center; Dr. Peter Mannon, University of Alabama; Dr. Rebecca Rady, Allergy, Asthma & Clinical Immunology; and Dr. Weily Soong, Alabama Allergy & Asthma Center.  Seventy people were in attendance, and the participants walked away feeling a sense of belonging and connectedness.  One attendee commented, “Thank you for providing this opportunity for people to get together and meet others with PIDD as well as the opportunity to learn from knowledgeable doctors who are actively practicing in the field.”

The Denver Patient Education Meeting featured engaging presentations from local experts

The meeting in Denver was attended by 40 individuals, some coming from as far away as Wyoming and Nebraska.  The fabulous duo of Dr. Pia Hauk of National Jewish Heath and Dr. Charles Kirkpatrick of the University of Colorado spoke to the group about PIDD and answered treatment questions.  The patients were so thankful for the information provided by the medical experts.  One person remarked, “I got more answers in the last several hours than I have in the last few years!”

Both meetings featured group sessions after the medical experts spoke where they had the opportunity to connect on common issues, strategies for disease management and seeing the positives of life with PIDD.

Once again, it is important to note that none of these meetings would be possible without the help of our amazing volunteers.  Thank you Fran Thompson in Colorado and Connie Martin, Joy Milling, Jane Napper, Kelly Patterson, Bridget Threadgill, and Tim Waskerwitz in Alabama!  Your help is always appreciated.

Just because Summer is officially over does not mean there is no more fun to be had.  There are more IDF Patient Education Meetings and plenty of other IDF events left this year!  Share in the knowledge and connections that IDF Patient Education Meetings offer!  Join us at an upcoming meeting or other great IDF event in your area! Check out the IDF Calendar of Events for details.

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.  To learn more about ways you can get involved, please visit the website at www.primaryimmune.org .

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By IDF_Emily – September 27, 2011