Tuesday, July 15, 2014

BBS conference and my kind of rock stars

At the end of June I sat for three days in this room (and in some break-out rooms) with these wonderful people:

...listening to doctors and researchers explain slide after slide like this one.
(I'm pretty sure I'll always will be struggling to learn this crazy doctor/research/ciliopathy BBS language.)

The BBS conference was finally here.  

As I mentioned after the conference two years ago back HERE (it's an every-other-year thing), somehow in the whirl of board nominations I became the deer-in-the-headlights vice president of the association.  So for the last two years I've been part of regular BBS family association board conference calls to help bring up BBS awareness and work to get BBS families on the grid for research and help.

I know I've put this pic in here before, but I want to remember those calls, always at 6:00 on Tuesdays (the most crazy part of the day, trying to incorporate schedules and time zones from board members all across the country), with the speaker turned on my phone as well as the mute as I drove carpools, fixed dinner, sat at volleyball games, put kids in time-out, taking it off mute here and there to add my vote or opinion in the middle of all the hoopla going on around me.  
It was a little bit of a crazy time, but boy howdy, it was fun to be involved as the President of the association (Tim) has taken this association leaps and bounds in the right direction to get BBS families the help they need.

Dave wasn't able to come with me this time around because it conflicted with some family and work things.  I sure wish he could have been there not only to meet the amazing people there, but to help me soak in and internalize all the great things that often take some discussion to fully grasp.  But there were some pretty amazing things they talked about and since this blog community has been so supportive of Lucy and I need to keep a record of all this I wanted to post a few things.

So, on to the rock star thing.

Different people get stars in their eyes about different things.  Lucy was over-the-moon when she actually got to meet THE princesses at Disneyland.

Claire thought she had died and gone to heaven when they announced that Mitt Romney was at the conference center when we went for Music and the Spoken Word last week (she was Mitt for Halloween a couple years back HERE and boy howdy she thinks that man rocks).

All that is fine and good, but my kind of rock stars are the researchers and doctors who do amazing things to help kids like my Lucy.  When you have a child with a rare syndrome your heart is heavy-laden with so much love and appreciation for those who take the time to focus on how to remedy all the things your child faces.  I can't even explain what that feels like.

For the past two conferences we have met at Duke University with Nico Katsanis who is the leading researcher there and who has a heart of gold.  This time we switched things up a little bit and held the conference at the University of Iowa to connect up with the equally wonderful researchers there.

So when Tim and I met with Val Sheffield the morning before the conference started (in the midst of trying to arrange all the details before everyone arrived), I was a little bit star-struck.
More about him HERE.

And then I was star-struck again when I met Arlene Drack, who is also a rock star with BBS families.

But I didn't get a good picture of just her, gosh darn it!  She was running around trying to organize things and did such a wonderful job hosting.  Here you can see a speck of her during one of her presentations:
I sincerely wish I could have had a moment to talk to her and pick her brain about so many things she is in the thick of helping with.  More about her HERE.

Here are her interns who were fabulous organizers and helpers to pull off the whole event:

I got to hang out with my old friend from the last conference Elise Heon.
She is from Canada and has also done such a great deal to help BBS families.  More about her HERE.

The other members of the board and I situated a lot before people started filtering in that night.
That's Tim above on the left, the president up on the left who has a son a year older than Lucy with BBS.  In the middle is Phil, who has BBS and was the total detail-guy for the conference.  Those are his kids on the right surrounding Jane, another BBS board member who rocks.  I have loved working with the three BBS members of the board...so fun to get to know them better.  They give me so much hope for Lucy.  

Here we are all together:
These guys have all become such great friends over the past two years.

The University of Iowa was an awesome place for a conference.  First of all, Iowa is so beautiful.

And second of all, the University of Iowa sure knows how to do research.
I am so incredibly grateful to Steve Wynn who has donated so many millions to help with vision research (HERE).




Break-out sessions:
Lunch:

Marshfield Clinic representatives were there as well.

Love those great ladies as well as Dr. Haws (another rock star among BBS helpers).

Some of my friends from when we went to Marshfield were at the conference.
 So fun to catch up with them.

More about the Marshfield Clinic back HERE.

So fun to catch up with all kinds of old friends from past conferences and to meet some new ones too:

Love these mothers with their kids.  Makes me tear up they are such amazing advocates.

Loved this cute family from Korea.

And I love this brother who is such a support to his two BBS sisters.  These three were so impressive.

Each year we have a banquet to give awards and get to know each other better.  This year I got permission from a local LDS (Mormon) church to hold the banquet there.  (Tim says he's going to start calling it the "Family Reunion" rather than the "Banquet" though, which I love...you do start to feel like these guys are all family.)

He gave a special award to Dr. Haws who has done so much to help get the registry started.

Part of Dr. Sheffield's family was able to come...they are all amazing people and it turns out their son knows my brothers from BYU days.  
 Small world.

We held board elections for the next board.
Darla and I couldn't stay on because of family stuff.   Sad to say goodbye to being in on the details wiht all these great folks, but I'm pretty relieved too.  I wasn't a very big help with all the darn house stuff going on this last year.  These new two members are incredible and are going to help take this cause so much further.

Rock stars again:

The church was kind of a rock star itself :)  So grateful for good places like that where you can gather for good causes.

On the last day Ed Stone (HERE) made me tear up a little bit when he talked about our "Volunteer Army" of BBS families.
He got us so powered up and excited about all the research that is in the works right now.


Tim showed us a video this awesome guy made (a guy named Bill Alms who also has a child with BBS) that tells all about the registry we have been raising funds to make happen.  It's done so well and explains so much about what in the world the registry is and why we are working so hard to make it become a reality.


With the money blog readers helped raise (back HERE) the beginning of that registry has become a reality.  Thank you THANK YOU!!   The Marshfield Clinic has donated the time and resources for the  initial development, and the funds will pay trained interviewers to work with families to gather and validate all the medical information from each person with BBS necessary to populate the registry.  The more money we raise, the faster we can include people in the registry and the sooner doctors and researchers can get to work developing therapies and treatments for BBS.

We hope to raise $75,000 as a BBS family this year, so those funds YOU helped raise along with the $10,000 Tim (the BBS President) has raised have helped us get off to a great start.
If anyone out there still wants to make a donation, click HERE and put the donation under Lucy's name.

All in all, it was a pretty great conference.

One of my new friends (another parent with a BBS child) told me he feels like the BBS family has been like a developing country without much support or resources, but that now it is becoming so empowered with so much exceptional, specialized help.

That's exciting to think about.

It was great to reconnect with other mothers who are going through some of the same things we are.

It felt great to have some of those wonderful BBS people show me their tools that help them cope with life.  From their canes to magnifiers to a Braille machine like this:

It felt good to get reaffirmed over and over again how important Braille is, even in a continually more technological world.

And it felt good to have a little rain:

And it felt good to be connected with people who are sure things are going to happen for this girl of mine.  Tim, the president told me that he's sure his son (a year older than Lucy) will lose his vision.  It's just too early to have a miraculous cure right now.  But that with the amount of explosive research going on right now, he's equally sure that his son's vision will be able to be restored.

And THAT felt best of all.

As I flew off to meet up with my family I adore so much, my heart was full of gratitude for my BBS family I have come to love so much over the years, including all those ROCK STAR doctors and researchers who are changing lives for BBS families.
Here's to many more years to come.

I will add more technical medical jargon to the I Love Lucy blog when I can. 

5 comments:

  1. I can't believe you basically came to my backyard! I live in iowa and let alone live really close to Iowa City. Your banquet was held at my stake center and looks like you ate at The Vine. Which is a family favorite of mine. I was so excited to read you came here. I have fallen in love with your family and blog. I'm still in shock you came here. I hope iowa treated you well.

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  2. I love the way you talk about the scientists and doctors as "rock stars!" I don't do vision research, but I do want my research to make a difference in this world. Your post is a good reminder that what I do could have a positive impact some day! I continue to pray that scientists will be motivated by people like little Lucy!

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  3. Hi Shawni, I'm always amazed at how much you do, you are your own rock star and that family of yours sure is lucky! I'm so happy that there is more research and more knowledge about BBS and you have so much more support. I continue to pray for Lucy and your family .:) Amy

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  4. This post chokes me up. We found out when our oldest daughter was 6 months old that she has cystic fibrosis. When she was 7 we moved to North Carolina and for many years we spent a Saturday each spring at Duke listening to researchers talking about the latest research, new meds, lung transplant stats and even cilia. Those doctors and researchers *are* rock stars and I never understood before our experience the gratitude and love we could feel for them. We've had a miracle in the last 2 years--a new medicine that was approved that targets only 4% of patients with cf and it works for her. It hasn't "cured" her, but it feels like it could be a game changer...

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