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!

Hi, I’m Stacey Martin.

I’d like to talk about Tdap vaccine recommendations and the opportunity we have to protect patients from pertussis.

Despite the use of pertussis-containing childhood vaccines, cases of pertussis have been on the rise in many communities nationwide, with an increasing burden of disease reported among adolescents and adults. In 2008 there were over 13,000 cases and 20 deaths reported to CDC.

In 2005, the Advisory Committee on Immunization Practices, or ACIP, recommended a dose of a combination tetanus, diphtheria and pertussis vaccine — or Tdap — for use in 11 through 64 year olds.

There are currently 2 licensed products that can be used. Because immunity from childhood pertussis vaccination wanes over time, this booster shot for adolescents and adults is essential. Boosting reduces the risk of contracting pertussis and can decrease severity of disease. Most importantly, vaccinating adolescents and adults can help prevent pertussis transmission to infants too young to be vaccinated. This youngest age group is most vulnerable to severe disease and death from pertussis.

Even though Tdap has been recommended since 2005, coverage rates are not as high as we’d like them to be. Among adolescents who are 13 though 17 years of age, coverage was estimated at 40% in 2008. Among adults, it was less than 6%.

Here are the key recommendations for using Tdap:

• Among adolescents who have completed their childhood pertussis vaccinations, Tdap is routinely recommended as a single dose with preferred administration at 11 to 12 years of age.
• If your adolescent patient was not fully vaccinated for pertussis as a child, check the ACIP recommendations and catch-up schedule to determine what’s indicated. Those resources are linked below
• Any adult 19 through 64 years old who has not received a dose of Tdap should get one. This can replace 1 of the 10-year Td booster doses.

However, it’s not necessary to wait the typical 10 years to get the adult dose of Tdap after the last dose of Td. An interval as short as 2 years from the last Td is suggested to reduce likelihood of increased reactogenicity.

Even shorter intervals may be appropriate if your patient is at high risk for contracting pertussis or has close contact with infants, or in situations where you might not get a chance to vaccinate the patient again. Providers should know that shorter intervals are not contraindicated and accumulating data reinforce safety of the vaccine. Furthermore, there are no concerns about immunogenicity with this decreased interval between Td and Tdap administration.

To help protect infants too young to be vaccinated, women should ideally receive Tdap before becoming pregnant. If a pregnant woman is at increased risk for contracting pertussis, such as during a community outbreak, you may want to consider Tdap during pregnancy since it’s not contraindicated. New moms who have not received Tdap should routinely receive a dose immediately postpartum, before leaving the hospital or birthing center.

In most cases, pertussis in infants is acquired from a family member. Imagine how devastating it would be for a mom to give her baby pertussis. Keep in mind that Tdap is not just for postpartum moms, it’s for all family members and caregivers of the infant.

Also, healthcare providers who have direct patient contact should receive a single dose of Tdap as soon as feasible if they have not previously received it.

Check out the resources on this page for more information.

And remember, think Tdap instead of Td. Thank you.

I’m wondering who is going to attend this, as I’m trying to decide whether or not to come out for it.

July 17, 2010
9:00 am - 2:00 pm

IDF Patient Education Meeting - Tampa Bay, FL

Join us for a one-day educational meeting presented for individuals, families and health professionals. IDF’s Local Patient Programs offer an introduction to IDF, and feature local immunologists and allergists addressing the treatment and management of primary immunodeficiency diseases. These meetings are the perfect occasion for patients and families to meet and share ideas.

Sponsored by 2010 IDF Core Service Sponsors: Baxter Healthcare, Biotest Pharmaceuticals Corporation, CSL Behring, Grifols, lgG America / ASD Healthcare, Octapharma and Talecris Biotherapeutics and IDF Sustaining Contributor Walgreens - IG Therapy Program

This meeting is an Outreach Meeting for the IDF sponsored by CSL.

If you have not had a chance to meet other PIDD patients, and you live in this area- please attend.

These are wonderful for meeting other patients, hearing the top Dr’s in your area speak, and learning you are not the ONLY one who has to live with PIDD.

May 8, 2010
9:00 am - 3:00 pm

IDF Operation Outreach - Knoxville, TN
Please come to the IDF Operation Outreach featuring a one-day educational meeting that will provide families and health professionals with an introduction to the Immune Deficiency Foundation, and includes activities designed to encourage peer support and networking. The meetings feature local clinical immunologists addressing the treatment and management of primary immunodeficiency diseases, insurance reimbursement specialists offering advice and resources, and pharmacists and physicians speaking on immunoglobulin therapy. Sponsored by CSL Behring.

RSVP by May 5, 2010 to Haley Franklin at IDF

Here’s hoping I see you at this meeting.

CSL Behring will be there with so much great info for patients.   You will have the chance to learn about the new Sub Q Drug, Hizentra, as well.

May 1, 2010
9:00 am - 2:00 pm
IDF Operation Outreach - Kansas City, MO
Please come to the IDF Operation Outreach featuring a one-day educational meeting that will provide families and health professionals with an introduction to the Immune Deficiency Foundation, and includes activities designed to encourage peer support and networking. The meetings feature local clinical immunologists addressing the treatment and management of primary immunodeficiency diseases, insurance reimbursement specialists offering advice and resources, and pharmacists and physicians speaking on immunoglobulin therapy. Sponsored by CSL Behring.
RSVP by April 27, 2010 to Haley Franklin at IDF

April 17, 2010
9:30 am - 2:00 pm
IDF Patient Education Meeting - Omaha, NE
Join us for a one-day educational meeting presented for individuals, families and health professionals. IDF’s Local Patient Meetings offer an introduction to IDF, and feature local immunologists and allergists addressing the treatment and management of primary immunodeficiency diseases. These meetings are the perfect occasion for patients and families to meet and share ideas.
This meeting is sponsored by: Baxter Healthcare, CSL Behring, Grifols USA, IgG America/ASD Healthcare, Octapharma, Talecris Biotherapeutics and IDF Sustaining Contributor Walgreens - IG Therapy Program
Please RSVP by April 14, 2010 to Haley Franklin at IDF.

Well, I’m all set to go to Orlando for the IDF National Conference.    While the theme is NOT Zebra – there is a recurring mode of Zebra that is part of this conference.

Why Zebra you ask?  It has to do with how our doctors come up with our diagnosis of PIDD.  The IDF is beginning an awareness and fundraising campaign for PIDD.   The are calling it THINK ZEBRA.  The reasoning behind this is when doctors are in medical school, they learn the saying,“when you hear hoof beats, think horses, not zebras.”  Most are taught to focus on the likeliest possibilities when making a diagnosis, not the unusual ones. However, sometimes they need to look for a zebra. PIDD patients are the ZEBRAS of the medical world.

So, on Friday evening, there will be black and white all over- along with, I’m guessing, some pretty crazy ZEBRA attire.

I’ve been busy helping with the marketing and getting everything ready for the BioRx booth and the staff who will be there ready to meet and greet the PIDD patients.   They are anxious to tell the special BioRx story- why this company is so different and caring about our special patient population.

Anyone who stops by Booth #11 will meet the gang.

You will recognize them easily by the big smiles they will be wearing.  There will be raffle baskets as well- and who knows- there just might be some ZEBRA stuff inside them.

If you don’t know what I look like- I’m including a pic of me here.

Please, stop me in my tracks and introduce yourself.

I can’t wait to meet you.

And, for those of you NOT attending- watch here for updates on the meeting, the medical info, and pics of our PIDD PEERS.

On May 3rd, Susan, Michelle, Betty and Maggie, all volunteers/patients with the IDF, put together an incredible fund-raiser.   It was a 5K Run/Walk which was held in Buttonwoods City Park in Warwick, Rhode Island.   They walked and ran through a beautiful woods and along the beach.  Great scenery, and a great day to be out.

This fun event was the first annual run/walk for this chapter of the IDF.   They were able to donate $1,000 to the IDF.  It was not, however, their first fund-raiser.

BioRx was a sponsor for this event.

                                GREAT JOB RHODE ISLAND!!

On May 15th, just outside of Boston, some very active and energetic volunteers with the IDF put on a very successful Wine Tasting and Silent and Live Auction.   They had terrific music as well from Joe’s Attic.  They had the very popular ZEBRA theme for PIDD patients. 

The event was a huge success, and they were able to raise over $11,000 in total.    The Project: Cure was launched successfully and the generous contributions helped bring ‘One More Day’ to many families.   Stef, a volunteer was exuberant and claimed “  It was a great night for PIDD families and for the IDF”!

I might add that BioRx was one of the sponsors for this event.

BioRx also donated several items MADE by PIDD patients as well.

                                 Michelle, Stephanie and Zebra Cake

                                 Zebra Cake made by Michelle

                                  Folks dressed in Zebra Garb

                                       Karen, Claire and Al

                                         Mary and Kathy

                               A great time was had by all.

I love going to IDF meetings around the U.S.   There are so many wonderful patients to meet, some for the first time, and some are already old friends.

Everyone has a different challenge, and everyone has gone through the ‘I was just diagnosed phase.’  We all know what that feels like- and it’s great to be able to help a newly diagnosed patient wade through the fear and trauma by holding their hand as they make their way.

The IDF held a patient meeting in Chicago in May.  I attended it with Aaron, the rep from BioRx  for that region.   We heard several great physicians speak- namely Dr Ramsay Fuleihan from Children’s Memorial in Chicago and during the Question and Answer session, Dr. Javeen Akhter participated as well.    The surprise guest was Dr. Wendell Richmond who came to listen, but contributed to the Q & A with answers that were right on the mark.

The doctors spent quite a bit of time discussing the relationship between having an immune system that is out of balance, and, especially in the case of  CVID, autoimmunity.   Thus, CVID and autoimmune disorders seem to go hand in hand.   Let’s see- last count- I have 4.

They also reiterated the fact that PIDD patients, especially with T-Cell deficiencies, should NOT have a live vaccine.   Make sure you remember that when they tell you to get a shingles vaccine, or any other LIVE vaccine!!

Some of my favorites from the IDF Conference in St. Louis last summer were in attendance too.   Kristin, a new fan of Vivaglobin, and her Mom and Dad were at this meeting.

Kristin and I are in the front row (we both love our Vivaglobin) and her parents, Sue and Rich are in the back, as well as the Vivaglobin rep, Kim Clarke.

I guess Dr Wendell Richmond was making both me and Kim Clarke laugh.

What in the world is this you ask??  One of the patients, Faye, is gluten intolerant, and ordered a delicious gluten free meal- but, alas, this VERY STALE COOKIE sat alone and dejected.

It sure seemed funny at the time.

Hope to see all of you again soon.