Top Tweets for #SPG4
How does #HereditarySpasticParaplegia type 4 (#SPG4) change over time? To track down the answers, researchers from the Spastic Paraplegia Centers of Excellence Research Network (SP-CERN) have created the most detailed natural history of SPG4 to date: https://t.co/KbBEkYEJes
Ottawa boy with rare disease gets tickets to Taylor Swift show thanks to generosity of others https://t.co/mDzEEz3etB via @cbcnews #RareDisorders #SPG4
Canadian family visits @UMassChan researchers developing gene therapy for #SPG4, a rare disease that causes muscle weakness and has no cure: https://t.co/CniifmVzfV
The Laidlaws are partnering with @BluGenesFdn to raise money for research efforts. #GeneTherapy #RareDisease
https://t.co/Slfj9yzvFQ is happening @RedeemerOCSB this Wednesday as part of #ocsbEducationWeek Donations greatly appreciated! @ocsbmrsbrennan #SPG4 #ocsbBeCommunity
This Wednesday, @RedeemerOCSB will be jumping to raise money for the 'Jump 4 Jack' initiative. Jack is in Grade 1 in @ocsbmrsbrennan class. Take a moment to get to know this amazing kid! https://t.co/N3gntZ8vF2
#SPG4 #ocsbBeCommunity
@DEF_Lab_HMS @DariusFakhari @BostonChildrens @FMKirbyNeuro @AstellasUS @CureAP4 Thank you for the work you are doing to help find a cure for Spastic Paraplegia!!! Here is my SPG4 warrior, Cullen! (Pic from “Go Texan Day” last week) #teamcullen #RareDiseaseDay #showyourstripes #spg4
We are thrilled to welcome @DariusFakhari of @BostonChildrens and Dr. Ariane Soldatos of @NIH and to our Medical Advisory Board!
#lillyandblair #spg4 #raredisease #hopeforacure #togetherwecan
Mark your calendars for our second annual Golf Tournament and Dinner taking place Friday, May 31 at @westfieldsgolf Registration and sponsorship opportunities open in November.
#lillyandblair #spg4 #raredisease #golf #charity
Thankful to @DariusFakhari and the team at @BostonChildrens for their insight, knowledge and compassion. #raredisease #spg4 #lillyandblair
Sharing some of our work for #RareDiseaseDay2023 Based on the notion that de novo occurrence of SPG4-assoiated #HereditarySpasticParaplegia might be associated to a more complex disease course, we investigated 40 patients with de novo #SPG4
This sweet girl is a member of the #raredisease community and picked this sweater to #showyourstripes for @RareDiseases #RareDiseaseDay. #lillyandblair #hsp #spg4
We are here at #RDDNIH to learn from and network with leaders in the rare disease space. @NIH @RareDiseases #lillyandblair #hsp #spg4 #RareDiseaseDay2023
We are working hard behind the scenes to push the boundaries of research. Last week's meetings included Dr. Heather Gray-Edwards and Dr. Miguel Esteves of @UMassChan and Dr. Ariane Soldatos of @NINDSnews and @NCATS_nih_gov. #lillyandblair #hsp #spg4 #raredisease
A rare example of a #geneticmodifier! Read Parodi et al’s recent work on overexpression of mitochondrial SARS2 as a #geneticmodifier of spastic paraplegia type 4 to learn more #HSP #SPG4 https://t.co/pNVsQ3BHMD
Spinal cord stimulation improves motor function and gait in spastic paraplegia type 4 (#SPG4): Clinical and neurophysiological evaluation Log in to: https://t.co/S2NCPWzBsH
.@AnnaBasu1 A few children with #SPG4 or other forms of (spastic) spinal palsy tend to use their arms for balance while walking. Asking them to cross their hands on shoulders makes walking more difficult (this can improve stability in some children with bilateral #CerebralPalsy)
#HSPandPLS Presentation from Dr Peter Baas currently on Virtual Conference Part 3 hearing “HSP: Understanding What’s Wrong So That We Can Fix It” #spast #spg4 #microtubules severing #protein #spastic #spf #spasticparaplegiafoundation #hsp #pls #research new #genetic #mouse
Today is National Rare Disease Day! Just want to take a moment to share a sweet pic of my Cullen, our little warrior!! #SPG4 @SpasticWorld @b_domangue @RaginCajunsBSB @TISDCPES
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