SAVE THE DATE: "Atypical HUS Parent Conference" October 7-9

[Cheryl Biermann]

I am so looking forward to our conferece at the University of Iowa coming up!

I recall the first year when Nathan's health was such that Bill was able to attend with our son, Joe, but I stayed home.  I was relieved in a way, thinking that all of the technical aspects of research would be beyond my ability to comprehend.  (After all, who hasn't attempted to read at least one of the medical papers that have been published and been cluelsess!) I'll really be embarrassed if I'm the only one! Anyway, Bill and Joe came home so pumped from meeting other families in person and the research/doctors assembled; their optimism was infectuous, and I determined if another conference was to be held, I would definitely be there this time.

From their reactions and conversations I was able to see that the doctors and researchers had done an excellent job of bringing highly technical information down to a layman's level, even Joe, (who was about 17), seemed to have a clearer understanding of the disease and the research being done.

If you are on the fence wondering if this conference is going to benefit you and your loved ones, I can tell you that for me, it was almost like a retreat when I was able to attend the second conference in Iowa. I was so excited to learn the latest information, (yes, I did understand most of it!), meet the other parents but most of all receive a huge dose of hope for our future! I attribute that hope to the ability to better understand, meeting the awsome families of these patients and being inspired by them and finally,in the doctors and researcher themselves, so brilliant, but also such down to earth, compassionate people.

I encourage you to consider coming, I'd love to have this hope and optimism run through everyone's veins...and I can't wait to meet you, even if only one person can attend, the benefit will spread to other family members as it did that first year to me when I couldn't make it.

If there is anyone else who would like to comment on either of the conferences, or respond to my musings, please feel free to do so.

[Kerri Grey]

I am very disappointed as i will not be able to make it... i was going to try my best to be there as its something i really wanted to do, but unfortunately now that i am pregnant i will not be there but definitely hoping that i will be able to attend the next one!!!

[Cheryl Biermann]

I have a feeling the new blog Bill posted will pose much interest which I know the U of I will be happy to discuss all the ramifications of this new development.

[Phyllis Ann Talbot]

Hi, the Talbots are planning on coming as well and are soooooo excited!!!! Like Jodi mentioned the medical information was incredible but we were surprised by just how great it was to meet so many folks who could really understand what each other goes through day to day! Agree with Heather , sure Bill will send us the info once he has a good # for whose attending. Svetlana, for flights I think you should just search all nearby airports as well, from GA for example, it's MUCH cheaper to fly into Moline, IL and only about an hour or less drive to u of Iowa.

[Heather Still]

I believe that Bill will give us the hotel info once he secures a group rate at one.  I usually fly into Cedar Rapids airport, but not sure what else is available, there is car rental there.  Once the hotel arrangement is made there may be a shuttle to the hotel???  Not sure.

[Svetlana Finley]

I am planning to come, but i need more info about what airport and hotel car renting, may be someone who knows more info about it can start forum.

[Jodi Kayler]

Thank you so much for putting this together. I am so thankful for the 1st conference. The info and medical staff were great--but meeting the other families was invaluable. For years, we thought we were all alone. It was amazing to finally meet others that have faced the same challenges. Kyle and I are both hoping to attend this year.

[Heather Still]

I must say that I whole heartedly agree with Cheryl.  The first conference was amazing.  My husband, Jim, was a little like Cheryl and didn't think he would understand so I took my sister (also an aHUS patient) and we not only understood, but meeting families like ours was simply amazing.  The next conference Jim was more than happy to attend and was very impressed by every part of it and even understood the majority of science talk because it was so well explained. 

As it is with planning anything when your family is affected by aHUS the worries of what if something happens when I'm gone or what if something happens to prevent us from going make one hesitate from commitment.  But at some point letting go of the fear and jumping in (with travel insurance on my airline tickets of course) was one of the best ideas I've ever had!!!! 

I encourage everyone to attend.  If you don't want to go as a couple because of finances or not having someone to take care of the kids, get another family member or reach out to other aHUS families that may live near you to possibly travel with.  You won't regret it and you will go home with the best understanding of aHUS you could possibly have and will learn so much about what is going on with research and its direction.  I hope to see a HUGE turn out this year!!!!!!!!