Scien&stsuncoverpoten&altargetforMND - MND Association
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NEWSLETTER CAMBRIDGESHIRE BRANCH SPRING 2021
Scien&sts)uncover)poten&al)target)for)MND)
Researchers) part8funded) by) the) MND) the! axons! and! their! connec'on! to! muscle! from!
Associa&on) have) discovered) a) new) target) for) degenera'on.!Work!is!now!underway!to!iden'fy!
poten&al) drug) trials) to) treat) motor) neurone exis'ng! licensed! drugs! that! can! boost!
disease.!! mitochondrial! func'on! and! repair! the! motor!
neurons.! This! will! then! pave! the! way! to! test!
Scien'sts!at!the!Euan!MacDonald!Centre,!led!by! them!in!clinical!trials.”!!
Dr! Arpan! Mehta,! the! Associa'on’s! Lady! Edith
Wolfson! Clinical! Fellow! (funded! in! partnership! Dr! Brian! Dickie,! the! Associa'on’s! Director! of!
with!the!Medical!Research!Council),!have!shown Research! Development,! said:! “Neurons! are! the
that! improving! the! func'on! of! mitochondria! – most! energy! hungry! cells! in! the! body! and! the
the! power! supply! of! nerve! cells! –! could! be! a unique! structure! of! motor! neurons! in! par'cular!
poten'al!treatment!for!MND.!! means! they! need! to! closely! regulate! and
maintain! their! energy! produc'on.! These! new!
The! study! paves! the! way! for! the! genera'on! of! findings! indicate! that! a! deficiency! is! occurring,
novel! therapies! targeted! at! boos'ng! energy! but!it!is!a!deficiency!that!also!offers!a!poten'al!
levels!in!mitochondria!in!MND.! therapeu'c!target.”!!
The! key! cells! affected! in! MND! are! the! motor! This!work!advances!our!understanding!of!MND!
neurons!that!allow!us!to!move,!eat!and!breathe. and! points! to! a! possible! target! for! drug!
Each! cell! has! long! thin! processes! called! axons development,!but!geTng!to!the!point!of!clinical!
which! connect! to! the! muscles.! The! researchers trials!is!s'll!several!years!away.!!
found!that!axons!made!from!the!cells!of!people
with! MND! were! shorter! than! in! healthy! cells To! read! more! about! the! scien'fic! detail! the!
and!that!the!transport!of!mitochondria,!the!cell’s Associa'on!has!posted!a!blog!ar'cle!which!has!
energy! source,! was! impaired.! For! the! first! 'me a! link! to! the! original! research! paper! hUps://
the! scien'sts! showed! that! by! boos'ng! the mndresearch.blog/2021/01/07/boos'ng[
mitochondria!the!axon!reverted!to!normal.!! energy[in[nerve[cells[is[a[promising[target[for[
mnd[treatments/!!
Dr!Mehta!said:!“Our!data!provides!hope!that!by!
restoring!the!cell’s!energy!source!we!can!protect!
NEWSLETTER CAMBRIDGESHIRE BRANCH SPRING 2021
Ri c k) Ne l m s) a n d) p a i n& n g) Suddenly! Rick! had! gone! from! a! person!
who! knew! virtually! everything! there! was!
without)brushes.!! to! know! about! his! subject! (Botany! and!
Rick! was! siTng! on! a! beach! in! Mauri'us! Biology)! to! someone! whose! brain!
watching! the! sun! go! down! when! he! appeared! to! be! full! of! coUon! wool!!
realized! that! this! would! be! his! last! trip! Reading! was! difficult,! because! by! the!
abroad,! working! as! a! Biological! Sciences! boUom! of! a! page! he! had! forgoUen! what!
P r o d u c t! M a n a g e r! f o r! C a m b r i d g e! was! at! the! top!! Watching! television! or!
Interna'onal! Examina'ons.! Over! recent! films!was!problema'c!because!he!couldn’t!
months!he!had!become!aware!that!he!was! remember! who! any! of! the! characters!
not! well,! he! had! started! to! stumble! and! were.! Going! out! for! walks/trundles! were!
walk! like! an! old! man! and! had! also! enjoyable! and! he! started! to! take! some!
forgoUen! large! chunks! of! how! to! do! his! photographs
NEWSLETTER CAMBRIDGESHIRE BRANCH SPRING 2021
As!he!spent!more!and!more!'me!pain'ng! labelled! useless! at! art!! Here! is! a! pain'ng!
on! his! computer,! he! started! to! get! (below)! based! on! one! of! the! photos! from!
problems! with! his! lymphoedema! so! wife! that!beach!in!Mauri'us,!‘Through!a!Glass,!
Sue!managed!to!source!a!wide,!high!desk! Darkly’,! painted! on! the! quiet! morning,!
that! he! could! drive! his! wheelchair! under! thinking! about! the! transforma'on! that!
and! put! his! feet! up,! thus! solving! the! Rick!is!undergoing.!!
problem,!so!he!was!free!to!spend!as!much!
'me! as! he!wanted! pain'ng,! so! he! is! now! As! 'me! moves! on,! Rick’s! pictures! get!
very!happy.!! more! and! more! complex,! some! taking!
months! to! work! on! and! he! has! started!
Since! then,! Rick! has! spent! 'me! doing! d o i n g! t a l k s ,! s h a r i n g! h i s! t a l e n t s ,!
things!like!trundling!round!the!gardens!at! encouragement! and! pictures! with! other!
Anglesey! Abbey! and! then! making! people.!!
pain'ngs! from! Sue’s! photographs.! He!
discovered! that! different! programs! allow! He!is!thinking!about!ways!of!spreading!his!
him!to!do!different!things,!and!that!some! output! further! afield! and! any! sugges'ons!
cheap!or!free!apps!for!mobile!or!iPad!can! to!help!him!do!this!would!be!welcome.!!
be! just! as! much! fun! as! the! more!
expensive! pain'ng! packages! that! he! also! Current! ideas! are! cards,! some! sort! of!
persuades!people!to!buy!him!from!'me!to! exhibi'on,!a!television!documentary!(!),!all!
'me.!! of! which! could! be! used! to! fundraise! for!
MNDA!and!the!Arthur!Rank!Hospice,!but!
A t! a! C h u r c h! Q u i e t! M o r n i n g! o n! we!have!no!idea!how!to!take!these!ideas!
transforma'on! his! pictures! came! to! the! forward,! so! if! this! is! your! area! of!
aUen'on! of! the! people! leading! the! exper'se,!please!talk!to!us.!
session! and! they! invited! him! to! become!
‘ar'st[in[residence’! for! Under! the!
Thinking!Tree–!not!bad!for!a!boy!who!was!
NEWSLETTER CAMBRIDGESHIRE BRANCH SPRING 2021
Associa&on)Visitors)and)) people!at!this!'me!was!amazing.!I!learnt!so!much!
through! these! years! about! the! illness! and! also!
Care)Service)Navigators)
about!surviving!the!illness!and!making!the!most!of!
life.! I! think! it! was! my! husband! who! suggested! I!
The!following!gives!a!liUle!detail!about!our!current! became! a!volunteer.! He!would! have!wriUen! me! a!
AV/CSN!Cambridgeshire!Team!and!puts!a!face!to!a! good!reference!I!think!!
name.!!
So!10!years!later!I!am!s'll!an!Associa'on!Visitor.!I!
These! volunteers! offer! confiden'al! support,! help! have! met! inspira'onal! people.! It! can! be! difficult!
and! guidance! to! people! with! MND,! their! families! but! generally! very! rewarding.! Working! with! the!
and! carers! by! phone,! email! or! face[to[face! visits! 'MNDA! and!volunteer! family! '! becomes! addic've!!
(at!present!due!to!the!Covid!situa'on!these!visits! We!would!love!some!more!volunteers!though.!
are!on!hold).!Cynthia)George:)Branch)Chair!
Pam)Wilkie)8)Associa&on)Visitor)
Brenda)Parkes)–)Care)Services)Navigator)
Pam! Wilkie! has! been! a!
Prior! to! re'rement,! I! volunteer! with! the! MND!
worked! as! a! community! Associa'on! for! 12! years.!
Occupa'onal! Therapist! Professionally! she! had! been!
with!the!Physical!Disability! a! paediatric! Physiotherapist!
T e a m! i n! S o u t h! s p e c i a l i s i n g! i n! n e u r o!
Lincolnshire.!! developmental! delay.! Her!
other! main! interest! was! the!
I! ini'ally! joined! MNDA! as! access! of! sports! for! children!
an! Associa'on! Visitor! in! Peterborough/ with! disabili'es.! Since! her!
Cambridgeshire! and! then! later! became! a! Care! re'rement! she! has! focussed! on! volunteering! for!
Services! Navigator.! In! this! role! I! try! to! ‘join! the! MND! as! a! member! of! her! close! family! had! been!
dots! up’!with! any! of! the! services! the! person!with! diagnosed!with!MND.!
MND! might! need! at! the! 'me.! Because! of! the!
complexi'es!of!MND,!this!can!be!quite!a!challenge! Fred)Smith)8)Associa&on)Visitor)
[!and!especially!since!March!2020.!
My! name! is! Frederick! Smith!
Chris)Glover)8)Associa&on)Visitor) and! I! took! on! the! role! of!
Associa'on! Visitor! about! 18!
I! am! the! longest! serving! months!aeer!my!wife!passed!
member! of! the! Cambs! away!due!to!MND.!!
team.!I!joined!20!years!ago!
when!I!re'red!as!a!Speech! I! e n j oy! co n t a c ' n g! a n d!
and! Language!Therapist! at! visi'ng!people!with!MND,!so!
Pete r b o ro u g h! Di s t r i c t! that! they! and! their! family!
Hospital.!I!have!served!as!a! know!that!they!are!not!alone.!!
C o m m i U e e! M e m b e r ,! !!
Associa'on! Visitor! and! AV! Jenni)BarneM)8)Associa&on)Visitor)
Co[ordinator! and! found! it! all! very! fulfilling.!!
Recently,! I! have! reduced! my! workload! but! s'll! I! am! a! new! volunteer! who!
support!several!families.! previously! worked! as! a!
hospice! pallia've! care!
Sue)Hallifax)8)Associa&on)Visitor) Occupa'onal! Therapist!
before! joining! the! MNDA.!
I!spent!my!working!life!as! My! work! focused! on! the!
a!teacher!and!my!husband! mental!and!physical!aspects!
was! a! civil! engineer.! We! of! living! with! an! incurable!
worked! in! many! African! disease,! so! I! am! hoping! my!
countries! for! over! 15! professional! background! will! help! me! in! my!
years.! Sadly,! my! husband! volunteering!role.!
was!diagnosed!with!MND!
in! 2002! at! the! age! of! 51.! During! my! career! I! have! met! some! truly!
He! died! six! and! a! half! inspira'onal! people! living! with! MND! who! have!
years! later.! It! was! a! challenging! 'me! with! lots! of! without!doubt!been!the!catalyst!to!my!joining!the!
'downs'! but! many! 'ups'.! The! support! of! so! many! associa'on.!!
NEWSLETTER CAMBRIDGESHIRE BRANCH SPRING 2021
CommiMee)membership)changes)
I! keep! myself! busy! with! a! variety! of!
representa've! roles! for! Cambridge! City!
At!the!end!of!December,!2020,!our!Treasurer,!
Council.!I!have!previously!held!the!posi'on!of!
Melanie! White,! stood! down.! Melanie! has!
treasurer! for! the! Cambridge! Branch! of! the!
volunteered!at!the!Branch!for!16!years!and!at!
Society! of! Recorder! Players! so,! I! am! familiar!
present!is!'dying!up!the!end!of!year!accounts!
with!a!treasurers’!du'es.!
and! will! soon! be! guiding! our! new! Treasurer,!
Joy! Cavanagh,! on! the! complicated! work!
I! used! to! work! as! a! special! needs! teacher! in!
involved.!
Cambridge! but! have! now! re'red.! I! enjoy!
music!and!like!to!keep!fit!by!going!to!a!weekly!
In! September! 2020,! Simon! Crooke! who! had!
dance! class! and! walking! my! dogs! Didi! and!
been!our!Fundraising!Expert!and!our!Financial!
Shelly.!
Support! Coordinator! for! over! 5!years,! moved!
overseas! to! live.!Julia!Wilson! (Joy’s! daughter)!
Julia)Wilson:)Branch)Fundraising)Coordinator)
has!taken!over!the!posi'on!of!Fundraiser!and!
I!have!taken!over!the!Financial!Support.!
Hello!everyone!!!
We! are! very! grateful! to! Melanie! and! Simon!
for! all! the! work! they! have! done! for! the!
My!name!is!Julia!Wilson!
Cambridgeshire! Branch! and! the! MND!
and! I’m! now! officially!
Associa'on!over!a!number!of!years.!
Fu n d r a i s e r! f o r! t h e!
Cambridgeshire! Motor!
Read! a! bit! more! about! Joy! and! Julia,! in! the!
N e u r o n e! D i s e a s e!
profiles!below.!Maire)Collins:)Secretary!
Branch.!
Joy)Cavanagh:)Branch)Treasurer))
As!you!can!see!from!my!picture!I’m!preUy!full!
on!and!always!up!for!a!challenge!!
My!name!is!Joy!Cavanagh!and!I!am!your!new!
t r e a s u r e r! f o r! t h e!
You’ll! see! posts! on! our! social! media! pages!
C a m b r i d g e s h i r e!
with! all! kinds! of! fundraising! ideas! and! links!
Branch!of!the!MNDA.!
that! you! can! do! and! I’m! here! to! help! you! in!
any!way!I!can.!
I! have! been! a! member!
of! the! MNDA! for! five!
My!associa'on!with!the!branch!is!through!my!
y e a r s! a n d! m y!
parents!as!my!dad!had!MND.!
knowledge! of! MND!
h a s! c o m e! a b o u t!
My!email!is:!cambridge@mndassocia'on.org!
because!I!was!the!main!
carer!for!my!husband.!
Would)you)like)to)receive)this)newsleMer)electronically?)
If)you)would)prefer)to)get)the)MND)branch)newsleMer)electronically)let)us)know)and)
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Email)the)branch)secretary,)Maire)Collins,)at)secretarycambsmnda@gmail.com.))
NEWSLETTER CAMBRIDGESHIRE BRANCH SPRING 2021
PosAbility
NEWSLETTER CAMBRIDGESHIRE BRANCH SPRING 2021
We)now)have)a)TwiMer)account!)
In! addi'on! to! our! Facebook! page! and! branch!
website,! you! can! now! keep! up! to! date! on! the!
latest! branch! news! through! our! TwiUer!
account.!
Watch! out! for! fundraising! info! and! posts! on!
developments! rela'ng! to! MND! from! around!
the!world.!
Find!us!on!TwiUer!at!@MndBranchCambs!or!on!
Facebook!at!@cambridgeshiremnda!
Amazon)Smile)
Would! you! like! to! raise! money! for!
MNDA! by! simply! registering! on! the!
Amazon!website?!
It’s!easy,!just!open!the!Amazon!website! Online)Support)Mee&ngs)
and! type! Amazon! Smile! in! the! search!
As!no!face[to[face!events!and!social!gatherings!
engine.!!
can! take! place,! alterna've! online! support!
mee'ngs! are! taking! place! for! anyone! who!
Enter!your!email!address!and!follow!the! would!like!to!join!these!informal!get!togethers.!
direc'ons! entering! ‘Motor! Neurone! Cambridgeshire! Branch! combines! with!
Disease! Associa'on’! as! your! charity! of! Lincolnshire! and! these! are! hosted! on! Zoom! by!
choice.! From! then! onwards! every! 'me! either! Liz! Cooper! (Cambridgeshire)! or! Rachel!
you! order! an! item,! Amazon! send! a! Norman! (Lincolnshire),! Area! Support! Co[
percentage! of! your! purchase! price! to! Ordinators.!!!
Na'onal! Office.!This! does! not! come! to!
the!Branch!and!you!are!not!charged!any! For!anybody!new!please!do!feel!free!to!join!us,!
extra!by!Amazon.! we!are!a!friendly!and!suppor've!group!and!you!
will! be! warmly! welcomed.! We! use! the! chat!
func'on! alongside! the! mee'ng! and! are! happy!
Dona'ons! for! the! quarter! ending!
for!you!to contribute!as!much!or!as!liUle!as!you!
December2020! were! £2,373.57! from!
feel!comfortable!doing.!For!log!in!details!please!
AmazonSmile,!so!a!big!thank!you!to!
contact!one!of!the!following:!
everyone!who’s!registered!so!far.!
rachel.norman@mndassocia'on.org!
liz.cooper@mndassocia'on.org!
c.i.george@icloud.com!
As! soon! as! we! are! able! we! will! get! back! to!
holding! our! face[to[face! social! aeernoon!
gatherings!at!various!venues!in!Cambridgeshire
but! un'l! this! is! possible! online! is! one! way! of!
keeping!in!touch.!
Cynthia)George:)Branch)Chair
NEWSLETTER CAMBRIDGESHIRE BRANCH SPRING 2021
Cambridgeshire Branch Contacts
Branch Chair and Branch Contact
Cynthia George
01954 202095
07515 534430
c.i.george@icloud.com
Branch Secretary and Financial Support Coordinator
Maire Collins
01954 200873
secretarycambsmnda@gmail.com
52 Lambs Lane
Cottenham
Cambridge
CB24 8TA
Branch Newsletter Editor
Anthony Flynn
antonflynn@gmail.com
Fundraising Coordinator and Social Media
Julia Wilson
07709 215196
cambridge@mndassociation.org Dates of Get-Togethers in 2021
All Get-Togethers are
postponed until further notice
MND Connect
0808 8026262
mndconnect@mndassociation.org
MND National Office
01604 250505
enquiries@mndassociation.org
www.mndassociation.org
Registered charity number 294354
To find out more about the Cambridgeshire Branch visit
www.mndassociation.org/cambridgeshire
www.facebook.com/cambridegshireMNDA
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