SPF E-News Winter Newsletter

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SPF E-News: Winter, 2006

Welcome! The SPF E-News comes from the Spastic Paraplegia Foundation, dedicated

to finding the cures for HSP and PLS. http://www.sp-foundation.org

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NEWS

--NEW MEMBER TO SPF BOARD OF DIRECTORS - ONE POSITION OPEN (apply by February

20)

From SPF President Annette Lockwood: " The Board of Directors welcomes Larry

Asbury as our newest Board Member. There is one position open - please consider

joining our mission of finding the cures for all types of HSP and PLS and

providing information and support services. Applications are due February 20,

2006. The applicant needs to be available to attend the 2006 Annual Board

Meeting to be held in Nashville in April. Board Member application:

http://sp-foundation.org/assets/pdf/BoardApplication.dot . Board Member

Responsibilities http://sp-foundation.org/assets/pdf/BoardResponsbilities.pdf .

SPF Committee structure

http://sp-foundation.org/assets/pdf/SPFCommitteePolicy.pdf . For more

information, contact Annette Lockwood.

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--DVD OF THE 2005 NATIONAL CONFERENCE AVAILABLE (limited supply)

The 2005 National Conference featured world-renowned researchers K. Fink,

MD, U of MI and SPF Medical Advisor and Teepu Siddique, MD, Northwestern. Both

scientists have received SPF Research Awards. The DVD also includes footage from

the National TeamWalk for our Cures walkathon. Order here:

http://sp-foundation.org/store.htm

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--NEW: ROUTE 66 RIDE FOR RESEARCH - JUNE

Shellie Fisher and family is embarking on a Route 66 Ride across America, taking

her and motorcyclists from California to Washington, DC in June. The project

will raise awareness of SPF diseases and raise funds for research. Get involved

as a rider or a sponsor, or come out for a Cheer On Connection when the group

stops for lunch or dinner/overnights along the way in CA, AZ, NM, TX, OK, MO,

IN, OH, WV or DC. Visit http://www.sp-foundation.org/events-Route66Ride.htm.

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--HSP SYMPTOMS SURVERY - INITIAL EVALUATION RELEASED

SPF has been proud to promote participation in the German HSP Symptoms Survey,

organized by Rudolf Kleinsorge, who runs an HSP Support Group in Germany in

association with the Tom Wahlig Foundation. A small initial evaluation has been

released - http://sp-foundation.org/assets/pdf/HSPsurvey.pdf . A full evaluation

will be completed in the spring, when the survey is completed.

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--2005 TEAMWALK ANOTHER BIG SUCCESS

The 2005 TeamWalk effort raised some $180,000 for SPF Research Awards! Thanks to

everyone for their generous support! Please visit

http://www.sp-foundation.org/TeamWalk05/TWOhio-photos.htm to see a summary and

photos of the National Conference and TeamWalk Weekend in Columbus, OH. Local

TeamWalk Connections:

http://www.sp-foundation.org/TeamWalk05/TWConnections-photos.htm,

http://www.sp-foundation.org/TeamWalk05/TWConnections2-photos.htm

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CONNECTIONS AND OTHER EVENTS

Please contact community@... for more information

--San Diego, CA (Dana Point), March 4: Casual Lunch connection at the Ritz

hotel.

--Berkeley Springs, WV, April 1: The annual Spring Fling weekend for people

concerned with PLS or HSP, organized by Ronnie Grove. The Saturday Connection

will be held at the Millstone Restaurant, next to the Best Western. A block of

overnight rooms is being held at the Best Western for $69 per night. Call

and ask for PLS Group. Dinners will be organized for Friday and

Saturday evenings.

--Denver, CO, May TBD.

--CT, Spring TBD.

--Northern OK, Spring TBD.

--MA, Spring TBD.

--Fall Connections will be held in TX, NC, ID.

--Cheer On Connections - meet Shellie on her Route 66 Ride Across America in CA,

AZ, NM, TX, OK, MO, IN, OH, WV or DC. Visit

http://www.sp-foundation.org/events-Route66Ride.htm

World of Possibilities Disabilities Expos will be in Timonium, MD, May 19-21 and

andria, VA, Nov. 4-5. The Expo features assistive and adaptive technology,

durable medical equipment, computer software, mobility products and living aids.

Visit http://expo.caringcommunities.org/. NOTE: Turn your Expo visit into an

opportunity for an SPF Connection - contact us!

Abilities Expos feature independent and assisted living products and services to

improve the lives of people with disabilities. The Expos also offer a free

consumer and professional workshops. Visit http://abilitiesexpo.com. NOTE: Turn

your Expo visit into an SPF Connection where you can meet and chat with other

people living with HSP or PLS as well as visit the Expo. Expos:

New York Metro, April 21-23; Southern CA, June 16-18; Metro Detroit, Aug. 18-20;

Northern CA, Nov. 3-5

Support groups run by SPF volunteers in partnership with related organizations:

--Hollis, NH - with the local MDA Chapter. Fourth Tuesday of the month.

--Ann Arbor, MI - with the NORD Michigan Chapter. Second Friday of the month.

--Norristown, PA (near Philadelphia) - with the Ataxia Foundation. Second

Saturday of the month.

--Garden Grove, CA (near LA) - with the Ataxia Foundation. Monthly.

--Charlotte, North Carolina - with the Ataxia Foundation. Quarterly meeting and

also additional casual meetings in between.

--Bangor, ME - Monthly spinal cord Injury and disease support group. First

Thursday (evening) of each month.

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LINKS AND RESOURCES RECOMMENDED BY OUR COMMUNITY

GRAB BARS AND HANDY BARS HELP WITH SAFETY AND MOBILITY

--Grab Bar in bathroom: http://www.healthcraftproducts.com/bathsafety.htm

--Handy Bar to get in and out of car: http://www.handybar.com/

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SNOW AND ICE TRACTION CLEATS

Visit: http://cozywinters.com/ice-cleats/ice-cleats.html

In Canada: http://www.yaktrax.ca/

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INFORMATION AND RESOURCES ON RESTLESS LEGS SYNDROME

--Restless Legs Syndrome Foundation - offers online communities/support groups

and also medical and scientific data - www.rls.org

--WE Move not-for-profit organization to educate and inform about neurologic

movement disorders, including RLS - www.wemove.org/rls/

--Information about RLS and studies seeking patients from The National Institute

of Neurological Disorders and Stroke -

www.ninds.nihgov/disorders/restless_legs/restless_legs.htm

--MedlinePlus brings together information from National Library of Medicine and

the National Institutes of Health and other government agencies and health

related organizations - www.nlm.nih.gov/medlineplus/restlesslegs.html

--A wealth of information from a network of US Board Certified Physicians and

Allied Health Professionals inserting 'restless leg syndrome' and/or 'leg

cramps' in SEARCH prompt - www.medicineNet.com

--Information from Mayo Clinic -

www.mayoclinic.com/health/restless-legs-syndrome/DS00191

--Treatment and items for sale:

" Wellness Oil " for sale and also lots of good information about RLS -

www.restlessleg.net

A magnesium citrate based RLS " treatment " for sale - www.allcalm.com

A natural herbal " treatment " for sale - www.neurosil.com

Varicose vein treatment - www.veins-restlesslegs.com

A Glaxo Kline site about perscription drug Requip -

www.restlsslegs.com/

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HANDICAP VANS, WHEELCHAIR LIFTS, ACCESSIBLE VANS AND RAMP VAN CONVERSIONS FOR

SALE

Visit: http://www.amsvans.com/

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NATIONAL DISSEMINATION CENTER FOR CHILDREN WITH DISABILITIES

The organization serves the nation as a central source of information on

disabilities in infants, toddlers, children, and youth, IDEA, which is the law

authorizing special education, No Child Left Behind (as it relates to children

with disabilities), and research-based information on effective educational

practices. Visit: http://www.nichcy.org

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CUSTOM SHOES MAY HELP SOLVE SHOE DILEMMAS

--Arizona Walking Shop offers all manner of custom shoes:

www.customfootwear.com. Notice the www.customfootwear.com/rocker.html for soles

similar but different than MBT shoes.

--Comfort Shoe claims to offer " any type, any sole " and " send us your old shoes

and we'll make new shoes identical " : www.comfortshoe.com/index.html. They

feature a " foot drop " shoe.

--Ecustomwhoes claim make custom shoes at best prices:

www.ecustomshoes.com/site/641672

--Danceworld offers a Jazz Sneaker that may be helpful: They are made for

dancers

--Okkaido Roller Shoes can be found on eBay - may be helpful for people without

balance problems.

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NEW ON THE SPF WEBSITE

--Updated summaries of recent Connections with photos:

http://www.sp-foundation.org/connections.htm

--Route 66 Ride Across America

http://www.sp-foundation.org/events-Route66Ride.htm

--New in Patient Forum: Mark's experience with automobile hand controls -

http://www.sp-foundation.org/articles-handcontrols-print.htm

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RESEARCH AND TREATMENT

--EFFECTIVENESS OF TREATING SPASTICITY WITH BOTULINUM TOXIN

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1\

6225811&dopt=Abstract

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--ITALIAN TEAMS REPORT SIGNIFICANT PROGRESS IN TREATING HSP IN ANIMALS Gene

therapy to not only stop the progression of the HSP (caused by mutations in the

Paraplegin gene), but to actually partially cure the existing degeneration in

mice. View the free PDF of this article at:

https://www.the-jci.org/article.php?id=26210

Successful drug treatment of the most common type of HSP (caused by mutations in

the SPG4/Spastin gene) in a fruit fly model of the disease:

http://www.jci.org/cgi/reprint/115/11/3026

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--ADVANCES IN UNDERSTANDING ROLE OF SPASTIN IN CAUSING MOST PREVALENT FORM OF

HSP:

--Human spastin has multiple microtuble-related functions

http://www.ingentaconnect.com/search/article;jsessionid=188ic1oohbz43.henrietta?\

title=spastic+paraplegia&title_type=tka&year_from=1998&year_to=2005&database=1&p\

ageSize=20&index=3#avail

--Spastin and atlastin, two proteins mutated in HSP, are binding partners

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstra\

ct&list_uids=16339213&query_hl=3&itool=pubmed_docsum

--Axonal swellings and impaired transport linked to spastin

http://www.ashg.org/cgi-bin/ashg05s/ashg05?title=spastic%20paraplegia&sort=pgmnu\

ms&sbutton=Detail&absno=2214&sid=268914

--Spastin mutations in sporadic adult-onset upper motor neuron syndromes.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1\

6240363&dopt=Abstract

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--NEW REVIEW OF INFANTILE-ONSET ASCENDING HSP AND JUVENILE PLS

--These conditions are very closely aligned and form a continuum.

http://www.genetests.org/servlet/access?db=geneclinics&site=gt&id=8888891&key=Ee\

RR2zDlzUZpH&gry=&fcn=y&fw=XEa9&filename=/profiles/iahsp/index.html

--New research on this disorder was also reported at:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstra\

ct&list_uids=16321985

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--MRI STUDIES OF HSP

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1\

\6352904&dopt=Abstract

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--FRENCH SCIENTISTS DISCOVER 30TH GENE LOCUS RESPONSIBLE FOR CAUSING HSP

http://www.ashg.org/cgi-bin/ashg05s/ashg05?title=spastic%20paraplegia&sort=pgmnu\

ms&sbutton=Detail&absno=2094&sid=268914

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--MIT RESEARCHER DISCOVERS THAT NEURONS IN ADULT BRAIN DO GROW

Finding means it may one day be possible to grow new cells to replace ones

damaged by disease or spinal cord injury.

http://www.sciencedaily.com/releases/2005/12/051227111212.htm

Researchers continue to discover more about the spastin protein

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--DEFECTIVE SPASTIN CAUSES 40% OF ALL AUTOSOMAL DOMINANT HSP

Visit: http://tinyurl.com/dd25q

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--MUTATIONS IN THE SPG3 ATLASTIN GENE ARE MOST FREQUENT CAUSE OF HSP IN CHILDREN

Visit: http://tinyurl.com/b3cna

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MAKE A DIFFERENCE

The Spastic Paraplegia Foundation was formed in 2002 to establish a foundation

dedicated to finding the cures for Hereditary Spastic Paraplegia and Primary

Lateral Sclerosis and helping people seeking information and support. It is

managed and operated 100% by volunteers.

Our strength depends upon all of us:

Volunteer: http://sp-foundation.org/how-to-help.htm

Donate: http://www.sp-foundation.org/donate.htm

Thank you:

For remembering SPF for memorial donations and in your will

Support research when you do your online shopping (no cost to you):

http://sp-foundation.org/shopping.htm

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INFORMATION ON HSP: http://sp-foundation.org/hsp.htm

INFORMATION ON PLS: http://sp-foundation.org/pls.htm

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