I posted on Smiles and Duct Tape, but wanted to make sure that I included it here. Not sure where my link button went, so I am going old school – cut and paste. Hope it works!! We can’t forget that women have ALD too.
Love, Jess
Category: Uncategorized
An Opportunity for Caregivers
Please consider participating in this advisory panel to help bluebird bio to better understand ALD pre/during/post stem cell transplant.
bluebird bio plans to host a caregiver advisory board on November 7th in advance of the ALD Connect meeting in Waltham, MA. bluebird is looking for 6-8 caregivers of boys with ALD who have received allogeneic hematopoietic stem cell transplant (allo-HSCT) to gain insight and better understanding into the current allo-HSCT experience and unmet need, and perspectives on education gaps and current patient services for the community in the United States.
Please note that all interested individuals will go through a screening process and not all who are interested will qualify. For those who do qualify, an honorarium will be provided in compensation for their time as well as hotel accommodations for the night of November 6 and 7. For those participants who are not already anticipating attending the ALD Connect meeting, a travel stipend may be available.
For more information contact:
Liza Fiore (Snow Companies)
1-866-375-7249
THIS is ALD #26 – Hutch — smiles and duct tape
Chelette reached out to me to share her son’s story and I was so impressed with how determined she is as a mother. Many of us ALD moms have been forced to fight with doctors to find the correct diagnosis for our sons. In this family’s story, this mom wasn’t just fighting for her son, […] […]
THIS is ALD #25 — Grady — smiles and duct tape
Ten days ago I got a text from a dear friend from MA, “Watching the news on NBC – it’s about newborn screening for ALD.” I stopped what I was doing, went to the computer and Googled — NBC, MA, ALD and this popped up. CLICK HERE I thought, What a great ALD story! I […] […]
THIS is LEUKODYSTROPHY #24 — Ethan
For most people, Facebook is all about travel pictures, political comments and dog videos, but for me it’s largely about connecting with the ALD and other Leukodystrophy communities. Last weekend, I stumbled on a post from a mom that I wanted to share. Much of the focus on our diseases lately has about getting an […] […]
THIS is ALD #23 — Mason
Originally posted on smiles and duct tape:
Are there any GOOD ALD stories? I guess we need to define the word GOOD. good /ɡo͝od/ adjective 1. to be desired or approved of. “a good quality of life” ? Jack (THIS is ALD #1), as a GOOD ALD story. He’s happy and can walk and see…
THIS is ALD #22 — Alexis, Gerald and Jacob
Originally posted on smiles and duct tape:
It’s been a while since I’ve shared a THIS is ALD story, so I reached out to our ALD community. Within a few minutes I heard from several families willing to share their stories. The first is from Kiomara. THIS is ALD #22 — Alexis, Gerald and Jacob.…
THIS is ALD #21 — Jack M.
Originally posted on smiles and duct tape:
I have known Kerry for many years through social media. We both have sons named Jack and we both know how ALD can effect every inch of every life in an entire family – even when it only takes over one body. Thank you Kerry for sharing Jack’s…
THIS is ALD #20 — Manh Cuong
Originally posted on smiles and duct tape:
? When I reached out to the ALD community to share their THIS is ALD stories it’s mostly been mothers who have responded. I appreciate all of the input from mothers, but I’ve been wondering about the rest of the family. When ALD strikes, it doesn’t just strike…
THIS is ALD #19 — Alan, Cesar and Maximiliano
Originally posted on smiles and duct tape:
My name is Kim and I’m the oldest of four children. I have 3 brothers. Angel , Cesar, and Alan. My brothers were all born healthy. Until 2016 nobody knew this horrible disease ran in the family. December, 2015 my mom started noticing changes in my brother Alan…
THIS is ALD 