HSPers Japan

Hereditary Spastic Paraplegia Awareness
神経難病の #遺伝性痙性対麻痺（#HSP、#痙性対麻痺、#脊髄小脳変性症痙性対麻痺、#家族性痙性対麻痺）に関する情報ポータルです。
※基本的にリプライはしておりませんが、個別のご連絡はDMでお受けしております。

[HSPers Japan @HSPersJapan]

【Event】7/12（日）東京都三田で痙性対麻痺交流会が開催されます
Sunday July 12th 2026 - HSP Social Gathering in Tokyo

大変長らくの更新停滞を申し訳ありません...。ご無沙汰しております。
今週末7月12（日）に東京で開催される痙性対麻痺対象の交流会のご紹介です。
https://t.co/RKvpR83y26

[UK HSP Support Group @UKHSPGroup]

Just catching up with the @Paralympics - #TeamHSP gets a gold from @bauchet_arthur in the downhill skiing! Great work! #HereditarySpasticParaplegia #RareDisease

[HSPers Japan @HSPersJapan]

【News】
#Beijing2022 #Paralympics Day 2 (3/6) #TeamHSP LINEUP

明日3月6日は下記の2選手が出場予定です！
Don't miss it!

Arthur Bauchet (France) - Men's Super-G Standing ⛷️
Griffin Lamarre (USA) 14:05 - Ice Hockey Group Stage 🏒

[HSPers Japan @HSPersJapan]

【News】
#Beijing2022 #Paralympics Day 1 #TeamHSP HIGHLIGHT

Arthur Bauchet from France gets Gold🥇 in the Alpine Skiing Men's Downhill Standing
@bauchet_arthur We are so proud of you!!

アルトゥル・ボシェ選手（France）がアルペンスキー男子滑降（立位）で金メダルを獲得！！🥇⛷️

[Paris 2024 @Paris2024]

Le sacre du Roi Arthur 👑

Après 4 médailles d’argent en 2018, le français Arthur Bauchet est couronné dans la compétition reine, grâce à une descente d’anthologie.

Tout sauf de la Kaamelott !
#Paralympics #Pekin2022 #WinterParalympics

[adam lawrence @munkee74]

Hi @HSPersJapan @SpasticWorld @hsprf @Aepef @UKHSPGroup - my survey results are now on my blog. Happy #RareDiseaseDay

[HSPers Japan @HSPersJapan]

Source:
Piermarini, E. et al. (2021) Modeling gain-of-function and loss-of-function components of SPAST-based hereditary spastic paraplegia using transgenic mice. Human Molecular Genetics, ddab367.
https://t.co/rPDuJWu9vP

[HSPers Japan @HSPersJapan]

【Research】
米国研究者らが最良の遺伝性痙性対麻痺4型（SPG4）マウスモデルを作成
US researchers have made the best mice model for testing potential therapies for SPG4-HSP

https://t.co/lRq4CwaeiQ

#HSP #痙性対麻痺 #指定難病 #治療法開発

[HSPers Japan @HSPersJapan]

【お知らせ】英国HSP患者会のアダム・ロレンスさんから実態調査への参加呼びかけ！

毎年恒例のこの調査には、世界中から多くの患者の皆さんが参加され、研究機関が実施するような素晴らしい成果をあげています。回答は英語になりますが、よろしければぜひご参加ください。
https://t.co/jsY9BNDctw

[adam lawrence @munkee74]

You can still complete my #HSP survey this year! Early results: 83% with HSP consider themselves disabled. Most common bladder treatments: medication, then drinking less, training muscles, catheter and Botox. Many use pads, pants or nappies. https://t.co/tLNVRn83GW #RareDisease

[HSPers Japan @HSPersJapan]

#TeamHSP at #Tokyo2020 #Paralympics
Congratulations on your fantastic work! Thank you for inspiring us to do our best. Good luck on your next journey. #HSPersGoforit

@austin_smeenk
@tponce87
@E_A_swim
@smithonwheels
@IanMarsdenGB
#LailaSuziganAbate
#RebeccaHart
#RomanPolianskyi

[HSPers Japan @HSPersJapan]

【News】#HSPersGoforit 東京パラ痙性対麻痺チームの全ハイライト
The highlight of #TeamHSP at the #Tokyo2020 #Paralympic games

#パラリンピック #痙性対麻痺 #指定難病 #治療法の開発を

https://t.co/rk12FsJ7UJ

[UK HSP Support Group @UKHSPGroup]

Well done #TeamHSP - 2 of each medal 🥇🥇🥈🥈🥉🥉Fantastic work! It has been a pleasure to watch. As @EllieRobinsonGB says - Do things on your own terms. #IsItOK to copy @josierones and support your #RareDisease team? @HSPersJapan @SpasticWorld @Aepef

[UK HSP Support Group @UKHSPGroup]

HUGE congratulations & THANK YOU🙏 #tomvikingrun who has raised nearly £4,000 for the HSP support group! On Saturday Tom ran 17 miles in full Viking outfit 😱

Read Tom's story:
https://t.co/zjvybU8cOQ

https://t.co/G2RCCNZkwn

#HSP #HereditarySpasticParaplegia #RareDisease

[HSPers Japan @HSPersJapan]

【#HSPersGoforit】
#Tokyo2020 #Paralympics #TeamHSP 8人目の選手の情報入手！

Laila Suzigan Abate （ライラ・スジガンアバテ／ブラジル／水泳）
女子 T34 100m 自由形 6位
20pt 混合 4x50m フリーリレー 銅メダル🥉
https://t.co/Qd4Up5iUCF

ライラ選手、情報を早くに見つけられずごめんなさい…

[HSPers Japan @HSPersJapan]

@UKHSPGroup @EllieRobinsonGB @josierones @SpasticWorld @Aepef @E_A_swim @tponce87 @IanMarsdenGB @austin_smeenk Additional Paralympian as the 8th member of #TeamHSP at #Tokyo2020!

Laila Suzigan Abate from Brazil finished 6th in Women's T34 100m freestyle and gets 🥉 in 20pt Mixed 4x50m freestyle relay.

We're sorry for not finding her sooner...

https://t.co/yCJovM1Xob

[HSPers Japan @HSPersJapan]

【#HSPersGoforit】
#Tokyo2020 #Paralympics Day12 - 4 Sep
#TeamHSP FINAL

Don't miss it!
ついに痙性対麻痺チームの最終競技！

オースティン・スメンク
9:55 - 陸上 男子800m T34 決勝

@austin_smeenk Wishing you the very best of luck!

👇NHKサイト・ライブ配信
https://t.co/UNdnQ55utI

[UK HSP Support Group @UKHSPGroup]

Update from #TeamHSP @Paralympics: Gold from @E_A_swim in 50m S7 Mens Butterfly, 8th in final from @IanMarsdenGB in KL1 Mens Kayak Single, Progression to final for @austin_smeenk in T34 Mens 800m. @HSPersJapan @SpasticWorld. #RareDisease #HereditarySpasticParaplegia

[HSPers Japan @HSPersJapan]

We are so proud of you!!
Sorry we couldn't go to cheer you in person.

#Tokyo2020 #Paralympics #ParaCanoe
#TeamHSP #HSPersGoforit
#HSPers頑張れ #痙性対麻痺

[Ian Marsden PLY @IanMarsdenGB]

Well 5 years and that’s it from me Sorry I couldn’t bring it back but thank you everyone for your support it means a lot 💪🏻#paracanoe #fridaymorning #Tokyo2020 #ParalympicsTokyo2020 #Paralympics #paralympicGB @TheLastLeg @BBCRadioStoke @bbcmtd @stokecity

[HSPers Japan @HSPersJapan]

【#HSPersGoforit】
#Tokyo2020 #Paralympics Day 11 #TeamHSP
エバン・オースティン選手（USA）水泳-男子50mバタフライS7で金メダル！

@E_A_swim We are so proud of you!

#HSPers頑張れ #痙性対麻痺

[Tribune-Star News @tribstar]

Terre Haute native Evan Austin and Indiana State's Noah Malone both won gold medals at the Paralympics in Japan on Friday. Updated with photos and more detail. https://t.co/BKVwb36NEJ

[HSPers Japan @HSPersJapan]

@austin_smeenk We’ll be cheering you on.

[ぷーさん @YLxlbhdEC4ud1BH]

#HSPersGoforit
@austinsmeenk Go for your goal!
テレビの前で応援しています！

#HSPers頑張ろう
#HereditarySpasticParaplegia
#痙性対麻痺
#Tokyo2020
#Paralympics
#パラリンピック
#安全な開催を
#医療の充実を
#治療法の開発を
#CureForHSP

[HSPers Japan @HSPersJapan]

@austin_smeenk We’ll be cheering you on.

[しぶお @PXuFEP9MXrPgsVJ]

#HSPersGoforit
@austinsmeenk Go for your goal!
みんな頑張れ～～～！

#HSPers頑張ろう
#HereditarySpasticParaplegia
#痙性対麻痺
#Tokyo2020
#Paralympics 
#パラリンピック
#医療の充実を
#治療法の開発を
#CureForHSP