THIS is ALD (one story at a time)

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THIS is ALD.jpg

For the past few months, I’ve been asking people to share their Adrenoleukodystrophy (ALD) stories to post on my blog, Smiles and Duct Tape. My goal has been to educate readers on all the different ways that ALD can affect people AND to prove the importance of Newborn Screening for ALD to help change the future of our disease.

The ALD community has been amazing — sharing honest, powerful, sometimes painful, sometimes beautiful pieces, and the stories continue to roll in. I’ve decided that it’s time to make THIS is ALD into it’s own blog.

Hopefully, we will gather so many stories here that it can become a resource for ALD families to find their community and for non-ALD folks to better understand our disease.

Welcome to THIS is ALD (one story at a time), the blog.

Love, Jess

If you have an ALD story, please contact me at jctorrey@mac.com.

 

 

 

An Opportunity for Caregivers

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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
elizabeth@mypatientstory.com