The Hardest Thing I’ve Ever Been Through - My Battle with ALD

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The Hardest Thing I’ve Ever Been Through - My Battle with ALD
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REFERENCES
Aubourg P, Adamsbaum C, Lavallard-Rousseau MC, Rocchiccioli F, Cartier N, Jambaque I, et
al. (1993) A two-year trial of oleic and erucic acids (“Lorenzo’s oil”) as treatment for
adrenomyeloneuropathy. N Engl J Med. 1993;329(11):745-52.
doi:10.1056/NEJM199309093291101. 76. van Geel BM, Assies J, Haverkort EB, Koe
Engelen, M. (2017). Optimizing treatment for Cerebral Adrenoleukodystrophy in the era of
gene therapy. New England Journal of Medicine, 377(17), 1682-1684.
doi.org/10.105...
Moraes, C. T. (2013). Adrenoleukodystrophy and the mitochondrial connection: Clues for
supplementing Lorenzo’s Oil. Brain: A Journal of Neurology, 136(8), 2339-2341.
doi.org/10.109...
Regelmann, M.O., Kamboj, M., Miller, B. S., Nakamoto, J. M., Sarafoglou, K., Shah, S.,
Stanley, T. L., Marino, R., & Kamboj, M. K. (2018). Adrenoleukodystrophy: Guidance
for adrenal surveillance in males identified by newborn screen. Journal of Clinical
Endocrinology & Metabolism, doi.org/10.121...

Опубликовано:

30 окт 2024

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Комментарии : 2

@martinroberts4733 2 года назад

I started watching this video because you are my favourite magician who has taught me a lot and given freely of your time and talent to this 74 year old grandfather. For my most recent birthday my 7 year old granddaughter performed a card trick on FaceTime because of the card magic we have been sharing since I discovered your channel about a year and a half ago. As difficult as it was to hear your story, I watched it several times to make sure I understood everything and for my deep respect for you. It was very heartbreaking on the one hand but positive to learn that you are thriving as a college student, drummer, magician and probably accomplished in other areas that you are too modest to share. You are fortunate to have such a loving family. God doesn’t put more on your plate that you can endure, but he stretched the limit when you went through your bone marrow transplant. By sharing your story, you will give hope to many others. You have my deepest respect. Thank you for listening.

@x-aldhelp8592 2 года назад

Thank you so much for this my friend. This was exactly what I needed today. I'm so glad I could help you and your granddaughters relationship. And thanks so much for being so thoughtful not only to watch the video but to understand. That meant the world to me.