Fighting for Maxwell
@Maxs_Milestones
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Amber Freed is raising $4,000,000 to cure her son of a rare neurological disease called SLC6A1.
Joined October 2018
Please consider donating here to save Maxwell: https://t.co/i5WsP1VXLf.
https://t.co/XUQzXi6cR0 .
gofundme.com
After 2 years of IVF, Maxwell and Riley Freed were born on March 27, 2017 and made us the most h… SLC6A1 Connect needs your support for Milestones for Maxwell
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Maxwell’s story isn’t just ours anymore. It’s part of something bigger. Thank you for helping us get here. We’re not done. #RareDisease #Fundraising #Hope
https://t.co/eEGXeyA9Vg
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Now, any further donations will go toward helping other children get access to treatment. We’re turning our relief into fuel, because no parent should have to fight alone.
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To everyone who donated, shared, encouraged, or simply stood beside us — you helped save my child’s future. “Thank you” doesn’t feel big enough.
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After years of fear, medical papers, waiting lists, begging, crying, pushing, praying… we reached the moment we’ve been fighting for.
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Maxwell has finally received treatment. We’re seeing real progress. Real hope. Real change. ❤️
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Thrilled about this preprint article from Hao Chen & Albert Kim, MD, PhD about USP7 and Hao-Fountain syndrome! You guys had me at "a novel p53-independent ubiquitin signaling pathway." https://t.co/yxXspKNYrw
@AlbertHKimMDPhD @WUSTLmed #USP7 #HaoFountainsyndrome @FoundationUSP7
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The Hao-Fountain syndrome protein USP7 regulates neuronal connectivity in the brain via a novel p53-independent ubiquitin signaling pathway https://t.co/pcR077stIW
#p53
biorxiv.org
The development of the brain relies on precise control of protein ubiquitination and degradation, and hence, deregulation of ubiquitination signaling networks is thought to play an important role in...
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Rare disease drug development is complex and can be counter-intuitive at first glance. State legislative efforts can have long lasting and adverse consequences on the rare disease community. https://t.co/DuqsxczD5w
#patientvoicematters
lnkd.in
This link will take you to a page that’s not on LinkedIn
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What are the next big genes and why aren't you working on them yet? EARLY CAREER GRANTS via @AmEpilepsySoc apps due 1/12/23. @cureSYNGAP1 is a partner & will happily consider partial/full funding via this process. https://t.co/kmJXco2GpY
#SYNGAP1 🧬 #NeuroTwitter #epilepsy
aesnet.org
AES is accepting applications for early career grants until Thursday, January 12! Learn more about available funding and apply today: https://t.co/ZhxzoaBEAs
#NeuroTwitter #epilepsy
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Such exciting news for #SLC6A1. #MILESTONESFORMAXWELL
We're proud to announce our partnership with @combined_brain, @cureSYNGAP1, and SLC-6A1 Connect @Maxs_Milestones to deliver comprehensive genomic data on their diseases of focus. Read the latest news here: https://t.co/Z8XWK1c0iC 🧬 #raredisease #genomics #partnerships
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Excited that our new manuscript on the role of thalamic astrocytes in inflammation-induced seizure risk is now published in @ScienceTM! Congrats to my amazing student and first author Frances @cho_fs
https://t.co/2QbxqrOMBY
@UCSFepilepsy @UCSFNSGrad @GladstoneInst
science.org
Thalamic inflammation mediates enhanced seizure risk and altered cognition–related cortical states through astrocytic GAT-3 in mice.
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I am constantly in awe of the scientists that have dedicated their lives to children with SLC6A1. Please meet Yuliya Voskobiynyk, PhD, a Ukrainian scientist at @GladstoneInst working with @JeanneTPaz. Her perseverance and passion are unmatched. https://t.co/09AVo7NMcE
gladstone.org
Postdoctoral researcher Yuliya Voskobiynyk spurs action to support Ukraine at Gladstone and beyond
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Morgan, it has been years of being your loyal fan and I still love you. Your parents are here - Can I get a retweet for child with a rare neurological disease!?!
@MorganCWallen can we get a retweet!?!
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Today on National Sibling Day we wanted to celebrate some of our most important SLC6A1 heroes!
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