Hi,

Carol again.   It’s taken me a few days to recover from the long flight and the IDF Conference.  Sleep, rest, trips to physical therapy.   It’s always a balance between what you want to do and what you can do.   I knew I could do this- but I also knew I would pay a price.  It’s life.

I’m wondering if you have to do this very often.

Do you make choices that you know you will have to ‘pay’ for?   Is that what living with chronic/rare disease is all about?  I would love to hear from you about this???

I would like to cover the schedule for this conference so you can see what you might expect if you go in 2 years.

The first day – usually, Thursday is meant for nurses, volunteer meetings and patient networking during the day.  This year, there were also special sessions of Special Granulomatous Disease, SCID and WAS (Special Severe Combined Immune Deficiency Disease).

The evening was the WELCOME TO CALIFORNIA RECEPTION.  A great time to see old friends and make new ones.

Friday starts with a Breakfast Symposium and Opening Ceremony.

Breakout meetings are great.  You can pick and choose the ones that mean the most to you.

They are usually held twice- Friday and Saturday to you can plan to catch all of the ones you will need.

I will list the meeting topics:

CVID

Hyper IgM Syndrome

IgG Subclass Deficiency, SAD, and Hypogammaglobinemia

NEMO

NK Cell Deficiency

Selective IgA Deficiency

Various Hyper IgE Syndrome

Unspecified Combined Immunodeficiency with Autoimmunity and Infection

XLA

Allergies and PI

Antibiotic and Antifungal Therapy-THE FACTS

Breathe In, Breathe Out- LUNG ISSUES

Chronic Sinusitis- Why it Keeps Coming Back and How to Deal with It.

For the Ladies:  Women’s Health and PI

It’s Complicated: The Relationship between Autoimmunity and Immunodeficiency (This is my big challenge)

Understanding Immunological Testing

How to Cope and Managing Anxiety and Depression (could we please have this at EVERY meeting)

Let’s talk Research

During the day- there are special events for the kids and teens.

Friday evening is the IDF ZEBRA GALA AND SILENT AUCTION – Adult dinner and awards

It’s fun.

Saturday was a repeat of the Friday sessions

Closing sessions were held and all went to IDF Family Night at Disneyland.  (not all- some Zebras were far too tired by then).

I will follow-up with more info about the meetings next time.

Later

C

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