Image - Adam Dealey Image - The Adam Dealey Foundation for Ewing Sarcoma
Working in partnership with www.bonecancerresearch.org.uk (Registered Charity No. 1113276)

Ewing Sarcoma Parent Information

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The parent information page has been designed to guide parents to all the relevant information on Ewing Sarcoma. There are several research centres dealing with Ewing Sarcoma Family of Tumours, their treatment, staging, clinical trials and medicines. They should be able to provide you with the most update information regarding Ewing Sarcoma and all other Childhood Cancers, covering the needs for patient, medical and research professionals a like.

We would like to thank all of the under mentioned research centres, institutions, universities, hospitals, children's organisations for their valuable assistance in helping to bring you the information gathered throughout The Adam Dealey Foundation for Ewing Sarcoma website.

If you experience any problems with any of the various links within this web site, please can you let the Image - Email webmaster known so that we can fix the problem.

We continue to add new web links to the site regarding useful information and the research into Ewing Sarcoma. We would like your help, if you know of any website that you feel we should link to, please Image - Email contact us and we shall share this information with other families who may be effected by Ewing's.

Useful websites providing information for parents:

Follow the bullet point links below to the relevant subjects, these all link within this one page.

Cancer Resources

The actor Christopher Reeve who recently died is an inspirational to us all. Better known as the man of steel 'SUPERMAN'. The Christopher Reeve Paralysis Foundation has information about stem cell research and what steps are being taken within this field: www.apacure.com.

"So many of our dreams at first seem impossible, then they seem improbable, and then when we summon the will, they soon become inevitable." Christopher Reeve

The Anthony Nolan Trust. UK Leukaemia Charity: www.anthonynolan.com.

Cancer Bacup, helping people live with cancer:
www.cancerbacup.org.uk/Site/Cancertype/Childrenscancers/Typesofchildrenscancers/Ewingssarcoma/
www.cancerbacup.org.uk/Site/Cancertype/Childrenscancers/

Children's Cancer Web: www.cancerindex.org/ccw/guide2e.htm
Cancer Kids www.cancerKids.org is a site where the children take an active roll in the research to help their friends at school understand what it is they are suffering from. You can also take part in the survey to make the video, which is for educational purposes.
CancerNet www.cancernet.nci.nih.gov (a service of the National Cancer Institute), for information on the work into research Ewing Sarcoma (family of Tumours). We would like to thank CancerNet for allowing us to use information from their website.
Journal of the National Cancer Institute (Cancer Spectrum): www.jncicancerspectrum.oupjournals.org.

National Centre for Biotechnology Information: www.ncbi.nlm.nih.gov.

Makevek/Challenge (climb, cure, conquer): www.makevekchallenge.org/int_whatis_es.html/.
eMedicine Clinical (incident access to minds of medicine): www.emedicine.com/radio/topic275.htm/.

Kaposi's Sarcoma (Multiple Idiopathic Hemorrhagic Sarcoma) a summary of Kaposi's Sarcoma from the online version of the Merck Manual: www.merck.com/pubs/mmanual/section10/chapter126/126f.htm.

Yahoo Health, connecting parents dealing with Ewing Sarcoma.
http://groups.yahoo.com/group/e-sarcoma-uk/
NOAH (New York Online Access to Health): www.noah-health.org.
www.noah-health.org/en/cancer/types/childhood/types/sarcoma.html.
www.noah-health.org/en/cancer/types/sarcoma/index.html.
www.noah-health.org/en/cancer/types/childhood/types/sarcomas.html.
www.noah-health.org/en/cancer/types/women/endometrial/treatment.html.
Ecteinascidin and Yondelis also referred to as ET-743, treatment being trailed. Click to find out more, there are experts you can get in touch with: www.teamsarcoma.org/EwingsSarcoma/et-743.htm.

Amazon Books: childhood cancer 'A Parent's Guide to Solid Tumor Cancers' by Honna Janes-Hodder, Nancy Keene, Honna Janes Hodder, O'Reilly & Associates; ISBN: 1565925319:
www.amazon.com/exec/obidos/ASIN/1565925319/diverstco/

UKCCSG (The United Kingdom Children's Cancer Study Group): www.ukccsg.org.

National Cancer institute Cancer Research Portfolio.
http://researchportfolio.cancer.gov/cgi-bin/countbyterm.pl?Term=4

The Medical Research Council link includes:
MRC and other institutes, MRC Units, and major research centres, teams, groups, and laboratories supported through different grant mechanisms. See also their locations page for regional groupings.
www.mrc.ac.uk/index/about/about-research_centres.htm
www.mrc.ac.uk/index/current-research/current-research_locations.htm

The Institute of Cancer Research: has a list of research groups and programmes, details of which can be found by following the links: www.icr.ac.uk/resgroups.html.
http://www.icr.ac.uk/molcarc/teams/gene_list_def.html

Worldwide Directory of Oncologists/Hematologists (list of Cancer Centres).
www.worldoncology.net/world_oncology_network.htm.

The National Institutes of Health (NIH): www.nih.gov/icd/.

Clinical trials www.clinicaltrials.gov is a great site to find out what trials are currently being conducted. Also see the attached link regarding a specific trial that Zach is on.
www.clinicaltrials.gov/ct/show/NCT00046917?order=13/.

Frontiers in Bioscience: www.bioscience.org.
www.bioscience.org/atlases/tumpath/musbone/bone/2/1.htm
Research Portfolio (Sarcoma Tumour Research).
http://researchportfolio.cancer.gov/cgi-bin/countbyterm.pl?Term=48
Brave Kids: www.bravekids.org.

NORD (National Organization for Rare Disorders): www.rarediseases.org/
www.rarediseases.org/search/rdbdetail_abstract.html?disname=Sarcoma%2C%20Ewing%27s

Bonetumor.org (Bone Tumor Resource): www.bonetumor.org/tumors/pages/page141.html.

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Health Organisations & Hospitals

The Royal Marsden Hospital (Clinical Units) - Sarcoma Unit NHS Foundation: www.royalmarsden.org/clinicalservices/clinicalunits/sarcoma/index.asp

Hospital in the USA, expert Dr Rodriguez-Galindo (phone 901-495-3300): www.stjude.org
www.stjude.org/disease-summaries/0,2557,449_2167_2956,00.html?source=overture&kw=ewing+sarcoma
Department of Health: www.doh.gov.uk
Great Ormond Street Hospital for Children NHS Trust & the Institute of Child Health: www.ich.ucl.ac.uk
National electronic Library for Health: www.nelh.nhs.uk.

Royal Manchester Children's Hospital, Manchester: www.cmmc.nhs.uk.
www.cmmc.nhs.uk/this_site/search/default.asp?sc=%2F&qu=Sarcoma

Royal Marsden Hospital, Surrey: www.royalmarsden.org/clinicalservices/clinicalunits/paediatric/paediatric.asp
www.royalmarsden.org/clinicalservices/clinicalunits/paediatric/booklets/ewings.asp.

Alder Hey Children's Hospital, Liverpool: www.alderhey.com/RLCH/home.asp.

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Universities & Educational Institutes

Ablramson Cancer Center of the Universaty of Pennsylvania:
www.oncolink.com/types/article.cfm?c=1&s=2&ss=16&id=9160
www.oncolink.com/types/article.cfm?c=1&s=2&ss=16&id=9161

University of Newcastle Upon Tyne (search Ewing Sarcoma): www.ncl.ac.uk
http://cancerweb.ncl.ac.uk/cancernet/100021.html
University of Leicester (search Sarcoma): www.leicester.ac.uk
www.le.ac.uk/on/onweb1/publications.htm
University of Leeds: www.leeds.ac.uk
www.dentistry.leeds.ac.uk/oralpath/viruses/viral%20infections/HHV8.htm
Abramson Cancer Centre (University of Pennsylvania): NCI/PDQ Health professionals: Ewing's Family of Tumors.
NCI/PDQ Patients: Ewing's Family of Tumors.

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Special Tributes

Ireland Donations Connections, companies wishing too help with fundraising can request collection boxes by contacting Patricia Smith at her website. Please visit Krystle's site and find more about the work Patricia is doing to assist in helping bring awareness of Ewing Sarcoma: www.krystlesmith.org.

To a very special and brave person, I give you Scott. He is a credit to his family and example to all of how brave he is. The courage of this 12 year old can teach us all how to keep smiling: http://members.tripod.com/scotteec/index.html.

Robert James Bowman (Acute Lymphoblastic Leukemia t-cell), died on December 19th 2000, aged 14 yrs: www.caringbridge.com/page/jamiebowman.
Robert & Karen's website is dedicated to the memory of Matthew Robert Tait who died of Ewing Sarcoma on 14th March 1999 aged 11 yrs: www.geocities.com/Heartland/Hollow/4488/.
The Ewing's Sarcoma & Pediatric Cancer Support Group Resources Page, from The Cure Our Children Foundation. Is a support group based in US run by Barry Sugarman whose son Alon has Ewing's. Alon Sugarman was diagnosed on March 6th 1998 with Ewing Sarcoma of the Distal Femur: www.cureourchildren.org.
Inspiration Bruce & Bev Shriver Ossining, New York: www.liddyshriversarcomainitiative.org/Liddy'sStory/story.htm.

Teens living with cancer: www.teenslivingwithcancer.org/cancerFacts/whatIs/ewingsSarcoma.asp

Sarcoma Alliance www.sarcomafoundation.com was founded in 1997 by Wendy Sommers, who later died following a 15-year history with sarcoma, to gather and disseminate information about sarcoma. The site includes Wendy's biography and links other related information.

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Established since 1995 The Adam Dealey Foundation for Ewing Sarcoma.
The Adam Dealey Foundation is a non-profit charity working in partnership with the Bone Cancer Research Trust to bring public awareness of Ewing Sarcoma and help people who are suffering from.

Site last updated: 22 July 2009

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