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Recommendations for childhood cancer screening

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Bloom Syndrome International Meeting

 An International meeting will be held for Bloom researchers and families in Seattle on May 28-30, 2016. Please feel free to contact us if you want additional info or want to attend.

More info: 

www.bloomssyndromeassociation.org/events


Artikelen

Download deze twee artikelen:


Kiwanis Golfdag

Op vrijdag 26 september is er op golfbaan De Schoot in St. Oedenrode een geweldige golfdag georganiseerd door Kiwanis Uden-Veghel. Deze dag werd mede mogelijk gemaakt door diverse sponsoren en het inschrijfgeld kwam ten goede aan stichting Bloom. De stichting wil Kiwanis Uden-Veghel hiervoor heel hartelijk danken en ook alle deelnemers aan deze geweldige dag. Tevens dank aan de sponsoren: VanderLande; Franssen Optiek; QPC Schoonmaak; De Schoot; MFI; Golftrolleysonline.com; P. Verkuylen BMW Specialist; De Heische Hoeve; Korsten Van Dieperbeek; Rabobank Uden Veghel; ASV Mercedes; Thewi;


Bloom's Syndrome Association

The Bloom’s Syndrome Association was founded in 2012 by Paul and Susan Zaslaw of Hanover (USA). Now they have launched a great new website full of info and research on Bloom Syndrome. Please take a look: www.bloomssyndromeassociation.org


Mooi Bernheze

 Mooi artikel in de krant: (klik hier)


Nothing Else Matters

Op 1 februari 2014 wordt er een fantastisch initiatief georganiseerd in zaal de Pas in Heesch met 6 bands die een bijdrage willen leveren aan de Bloom Syndrome Foundation. klik hier voor meer informatie.


Donatie Gebroeders De Lorijn

Op 7 september 2013 heeft de Stichting een geweldige donatie mogen ontvangen van Maarten en Bert de Lorijn van De Lorijn Vastgoed. Deze donatie is aangeboden ter gelegenheid van de realisatie en de feestelijke opening van "Sparrenweide". Het project Sparrenweide is een nieuw winkelcentrum en apartementencomplex in het nieuwe centrum van Nistelrode. In plaats van een officiele openingshandeling hebben Maarten en Bert deze donatie gedaan. Het behoeft geen betoog dat de Stichting hiermee geweldig blij is. De donatie geeft de Stichting de mogelijkheid het onderzoek in samenwerking met het UMC St. Radboud te Nijmegen te continueren.
Tijdens de bekendmaking van deze schenking ging een golf van geluid en enthousiasme door de zaal. Deze golf is nog steeds hoorbaar binnen de Stichting.

De Stichting wil hiernaast tevens onderstaande personen en bedrijven bedanken voor hun gulle bijdrage:

Bouwbedrijf Peter Peters
Installatiebedrijf van Dinter
Landerdse Beleggingen BV
Gebr. Dijkhoff BV
HAV20 BV
Jan van Erp BV

 


Hello... Please Read This. CONTACT

Together with the Bloomsyndrome.eu, the Radboud University Nijmegen Medical Centre started a study on the treatment of cancer (outcome, special schemes, side effects) in Bloom patients. As you can read on this website cancer is one of the major complications of this disease. So far there is no scientific research which shows whether you need an adapted treatment. In order to investigate this subject the Radboud University is looking for case reports of Bloom patients with cancer. We hope to contact all these patients or their family or their docters to collect all the data we need. Most of the Bloom patients know this disease is very rare, so we really hope they will be willing to participate in our research. Together we want to optimize the treatment of cancer in Bloom patients!

If you want to participate or if you do have any questions, please don’t hesitate to contact info@bloomsyndrome.eu


Radio interview

Click here: (www.youtube.com/watch)


Bloom explained in video

Click here: (www.youtube.com/watch)


Sherpa Racing Team

Op 12-13-14 augustus 2011 vindt er in Heeswijk - Dinther een 24-uurs Solexrace plaats. De beide teams van het Sherpa Racing Team strijden mee voor de eindtitel. Hiernaast zoeken zij sponsoren om hiermee zoveel mogelijk geld op te halen voor onze Stichting Bloom Syndrome. Hiervoor zetten de 8 coureurs en monteurs zich geheel belangenloos in. Wij willen ze hierbij dan ook veel succes wensen.

Indien u de beide teams wilt sponsoren of komen aanmoedigen vernemen wij natuurlijk graag van u. Kijk vooral ook op de website www.sherparacingteam.nl.


Summary scientific workshop

The Bloom's Sydrome Foundation was a partial sponsor of a workshop entitled Molecular and Clinical Mechanisms in Bloom's Syndrome and Related Disorders held at the University of Chicago Gleacher Center. Please click <here> for a summary of this scientific workshop.


Short film

This 13 minute short film, created by the Jewish Genetic Disease Consortium (JGDC) will be an integral part of the JGDC’s ongoing educational programs. Click <here> to watch.


Bloom's Syndrome Registry

Dr. James German and his colleague Dr. Maureen Sanz have created a new website to share information about their Bloom’s Syndrome Registry. The Registry continues to conduct vital scientific research and organize data from their many years studying the disorder and meeting with individuals with Bloom’s Syndrome. Please see http://med.cornell.edu/bsr


The media on the Bloom Syndrome Conference

View this link 

Aimee Levitt

 


Bloom Syndrome Conference

May 27-28, 2008

 

Location: University of Chicago Gleacher Center, downtown Chicago, Illinois

 

 

The Conference has a medical part and a more practical part.

 

 

 

Medical Conference  Molecular and Clinical Mechanisms in Bloom’s Syndrome and Related Disorders

 

For more information and program:  Bloom Syndrome Conference    


Research Projects

The Bloom's Syndrome Foundation’s most significant investment is with The Ohio State University Comprehensive Cancer Center to find a treatment or cure for the disease. Individuals with Blooms syndrome are missing a protein called BLM. It is the lack of this protein that defines Bloom’s syndrome and causes the problems and symptoms we know about, most notably cancer. It is not possible to put this protein back into the body. So the objective is to find a substitute that tricks the body in acting kind of like it has that protein. Dr. Groden is working on this with various proteins an chemicals to see if she can reverse some of the biological occurrences. Her partner Dr. Fishel will figure out chemically, how to get it safely into the human body.

Principal Investigators:

  • Richard Fishel, PhD Professor of Molecular Virology, Immunology, and Medical Genetics
  • Joanna Groden, PhD Professor of Molecular Virology, Immunology, and Medical Genetics 

Collaborative Investigators:

  • Samir Acharya, PhD Assistant Professor of Molecular Virology, Immunology, and MedicalGenetics
  • Michael Freitas, PhD Associate Professor of Chemistry
  • Christoph Schmutte, PhD Assistant Professor of Molecular Virology, Immunology, and MedicalGenetics 

Location: 

  • The Ohio State University Comprehensive Cancer Center 400 W. 12th Ave. Columbus, OH 43210 3rd Floor


Bloom Syndrome Registry

In 1960, Prof. James L. German III, MD started the Bloom Syndrome Registry. This registry has DNA samples, and medical and personal histories on several hundreds of children afflicted with Bloom’s syndrome. Unfortunately, Dr. James German and Dr. Maureen Sanz were unable to continue the Registry. With funds from the Foundation,  they will reopen and maintain the Registry. This will enable the Registry to cull and analyze the data in order to provide new and detailed information about the disease to physicians, scientists and Bloom’s syndrome families. The Registry will also employ clinical personnel so that Bloom’s syndrome families will have a place to go to seek advice, counsel and information.

Bloom's Syndrome Registry

Bloom's Syndrome Registry
James L. German III, MD
Professor, Departments of Pediatrics and Microbiology
Cornell University Medical College
1300 York Avenue
New York, NY 10021
Tel: 1 212 570-3075
Fax: 1 212 570-3195