GFPD: In Their Eyes

Thoughts after attending the Global Foundation for Peroxisomal Disorder's Scientific Advisory Board meeting.



Some of the GFPD kids and their moms!

For the past two years I have had the opportunity to learn more about the Global Foundation for Peroxisomal Disorders (GFPD).  Serving on this board continues to change my heart.

When I look at the eyes of everyone in these meetings, I see a universal theme of limitless hope. The eyes of the parents, scientists and doctors leave a series of photos that will forever be in my memory. As I had the honor to sit in the recent Scientific Advisory Board Meeting in Washington, D.C., my eyes were first drawn to the parents of PBD children in the room. There are no words that need to be spoken. Their eyes tell me how grateful, thankful, hopeful they are for this worldwide team that is working for their children.  

Ashley, a GFPD staff member, working check-in at the scientific conference.

As the Scientific Advisory Board speaks, I have no personal knowledge that allows me to fully understand the scientific scope of their efforts. But I see the respect they have for these families. They are the kindest individuals, who use their gift of knowledge for this organization and are also invested in each child’s struggles. They are researching and navigating uncharted territories on a mission to help these families. Anyone who knows me realizes I am not frequently at a loss for words, yet I find myself struggling to complete sentences when talking with these individuals. I know their names and know many stories from the families about these modern-day heroes. So why did I feel the need, while in the elevator with one of the doctors, to tell him how I had a sensor tag stuck on my dress that the store forgot to remove? I mean, I could have told him thank you. Thank you for everything you do for these families and the organization. The list of other items I could have mentioned is long. Next year at the conference I hope to change this and take a moment to chat with each one.

Me with Dan, from the Oklahoma Center for Nonprofits, Francis Collins, director of the National Institutes of Health, and Melissa Bryce Gamble, executive director of the GFPD!

The families of the GFPD are human. After you meet them, though, you wonder, "Are they really human, or are they super-human?" I think they are super-human. The siblings of the kids affected by PBD could teach us all some patience. I witnessed countless moments of love and patience. These siblings are the best example of how we should treat others who have differences. They love on their siblings and look at them with so much joy. Too often, it seems, we let the little annoyances of life get the best of us. Myself included in this category.

Jackson

Observing the interactions with the parents at the conference hit my heart strings with a beat that will never stop. The balance of living in the moment, taking care of their children, working and advocating is more than most will ever mange in a lifetime.

Me with Kiran, whose brother passed away from the disorder.

The biggest gift, in my opinion, is time.  Time is not available to be purchased. There are moments we wish would never end. There are people we wish we could see more. These families of the GFPD are asking for more time. More quality time with their kids. More moments in time when their child with this disorder is pain free. Thank you to all of the families, staff, scientists and doctors, for all you do for the GFPD.

If you want to learn more about this organization here is their website: https://www.thegfpd.org.

Families working on an art project for Hues for Hope.

Also, in Tulsa on October 5 is an event called Hues for Hope. This first-time event will be held during the First Friday Art Crawl. The goal is to raise awareness and funds for this organization. 

 
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Tulsa Times Two

Java IV Always

About This Blog

I'm a stay at home Mom with twin girls who are 4 years old. Born and raised in Tulsa, I just moved back from Dallas and am excited to be back in the 918! It feels like I have been gone a decade and have never lived here as a Mom. Each week, I will be exploring the hip toddler spots in town. For those stolen moments that are kid free, I will share how my Mom brain relates to people who are older than 2 years old. My favorite show is Gilmore Girls, and java is in my hand 24/7. Raising twins, I strive to show them they are each unique and one of a kind. Hugs, embarrassing Mom dancing skills and good intentions are how I roll. I cannot recreate anything on Pinterest, but for our family, we are perfectly imperfect.

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