January 16, 2015

Winston's 6th Month

Oh, sweet Winston.  Darling "Dubby".  My Little Prince.
I can't believe it's been over half a year since you entered our lives.
You are a joy in every dimension!

Strangers call you the "perfect Gerber baby"--and you really are.
Even teething (you have two!) or fighting a small cold, you are always content and smiling.
And you are always, ALWAYS on the move.

Last month you started crawling.  
This month you started climbing stairs and cruising.
You are feeding yourself with a *gasp* pincer grasp!  
(Sweet potato puffs are your favorite.)

What will next month bring?  Every day you change so much!
Your father and I marvel at everything you do and the little person you are.

We take nothing for granted.  
You're a gift.

Eventually, Victoria will come around to realizing that too.  ;)

While I wish I had taken more photos (like I did with Bertrand and even Victoria), I don't regret spending that time snuggling you instead.  :)

Mama loves you more than there are stars in the sky, little angel.

January 8, 2015

The only thing sexier than a minivan...

Our new mobility van: a 2015 Toyota Sienna with VMI in-floor, slide-out ramp conversion.
Bertrand is convinced that all the girls will love it.  ;)

January 1, 2015

Happy New Year 2015!

We wish everyone a joyful new year!

Resolution #1: Blog at least once a week.  Baby steps!

December 17, 2014

Bertrand turns 7!

Things have been a little hectic with the arrival of number three -- so hectic in fact -- that it's taken us a week to post on Bertrand's amazing 7th birthday!

Courtesy of the amazing Szajnuk family, Bertrand spent his 7th birthday meeting the Utah Jazz players!

We arrived for the pregame warm-up, and Bertrand got to sit on the court:

The players came over one by one to wish him Happy Birthday, sign his basketball and take a photo with him!

The Jazz then went on to beat the Spurs in honor of Bertrand's 7th birthday!

Bertrand and Victoria had a total blast cheering on the team to victory!

What an amazing 7th birthday!!!

November 24, 2014

A Smile Worth Sharing - 2014

Bertrand's photo for first grade, age 6, 2014-15 school year. The following are school photos from 2011-12 (preschool age 3), 2012-13 (preschool age 4), 2013-14 (kindergarten age 5), and proof that Bertrand is an increasingly happy guy!

I still want to eat these sweet little cheeks!

November 13, 2014

Face of Cannabis

Can you spot baby Winston?  :) (Photo credit The Salt Lake Tribune.)
Just a quick post to let you know we are alive but busy!  Yesterday we hosted an event for the "Face of Cannabis" Project on behalf of the Epilepsy Association of Utah and Hope for Children with Epilepsy at the wonderful Holodeck.  It was a joy and honor to work with the talented Nichole Montanez and the 22 Utah families who came out to share their stories and support.  Together, we will keep fighting to make treatments available to all kids who need them!

September 9, 2014

3rd Annual RARE Patient Advocacy Summit

The Global Genes Project’s 3rd Annual RARE Patient Advocacy Summit will be held Sept. 11-12 at the Hyatt Regency Resort & Spa in Huntington Beach, CA.
It’s a chance to learn all about being a patient advocate, proactive and productive in efforts to better the lives of those with rare disease; to be an effective advocate in lobbying elected officials and reach out to major pharmaceutical companies, forming a relationship to bring drugs to patients.
More than 200 participants are expected to attend. For those who can’t be there in person, the conference is also available to view via Livestream. To register for the FREE Livestream Event, please go to: http://globalgenes.org/2014-summit-livestream-registration.
This year’s sessions include:
  • Caregiving: Strategies for Staying Afloat, Presented by Caregiver Action Network
  • The E-Patient Revolution, Presented by Health 2.0 and Smart Patients
  • Patient-Centered Benefit-Risk Assessment, Presented by FasterCures
  • Making your organization an “Unstoppable Charity”
  • Lobbying at the State and Federal Level
  • Transition & Transformation with Rare Disease from Adolescence to Adulthood.
  • Must Have Collaborations for Successful Drug Development

 Two new sessions this year:
  • Deep Dives: Branched-off discussions that will allow small groups to interact with subject matter experts to help them go more deeply into the content of each session have been added to the agenda.
  • Science Briefs: 15-minute science pitches with 5 minutes of Q&A, discussing some of the most promising innovations in science.

Those who watch on Livestream can participate via twitter and Facebook using the hashtag #2014GGSummit.
Read more about the summit hereTo register, visit globalgenes.org/events.