Decembre 2014

Bonsoir les Espoirs , bon bin c'est la dernière journée et soirée de l'année
Je pense à vous et sans doute je passerais ouvrir demain à moins que quelqu'un se sente de le faire ( je suis une vilaine lève tard ) .
nous avons de la neige depuis samedi dernier et pour une fois assez pour faire plaisir aux skieurs .mais perso j'ai parfois trouvé difficile de conduire pour aller au boulot .
là je ne retravaille que lundi .
je vous souhaite une bonne soirée pour finir cette année et je vous retrouve demain

Bonjour les Espoirs , je passe moins souvent mais je viens vous lire régulièrement et je pense à vous tous les jours .
J'espère que vous passerez de bonnes fêtes en famille et/ou avec des êtres chers .
Ici le temps n'est pas vraiment celui d'une veille de noël puisqu' aujourd'hui grand soleil , et juste un peu plus froid que les jours précédents .
je pense que je repasserais plutôt après noël
à bientôt donc

Mais, oui, Denis! Autant que je pourrais!
C'est vrai que ces petits smilies sont d'une grande aide pour traduire mieux par écrit nos sentiments, car le clavier nous cache... en même temps il nous protège! :-)
Voilà le soir, pour nous en France. Un samedi bien rempli, retour aux tâches familiales, les courses, remplir le frigo, prévoir pour les jour de fête, faire le rangement, grrrr, qu'est ce que c'est casse pieds! Et en plus il fait si doux, la neige ne s'annonce pas, quel dommage, c'est si joli un Noël blanc! Mais bon, le feu de bois embaume, huuuuum!
Joyeux Noël à toi aussi Denis! je vous porte tous dans mon coeur, et Espoir notre forum! je repasserai avant Noël, sûr!
Bizzzzzz
Avignon

Comme tes bonjours me mettent de bonne humeur, je réponds toujours de cette manière. Mais après je me relis et je sens le besoin de rajouter des smilies parce que ce n'est pas évident de faire passer un sentiment juste avec des mots écrits. Joyeux noel à toi Avignon et j'espère te garder sur le site longtemps.

MERCI! Denis,
Bon samedi à toustes, et chacun(e)!
Encore une journée qui s'annonce sous le brouillard, mais avec beaucoup de choses à faire. Je repasserai plus tard.
Plein de bises!
Avignon

voilà voilou Madame de Avgnon... Vos désirs sont des ordres. Et dans le panneau d'administation vous allez dans l'onglet smiley et c'est très facile à ajouter. Une journée que vous ça vous tentera vous nous changerez tous les smileys, ça nous surprendra un peu.

Denis, je le lirai tranquillement, tu peux en être sûr! au moins pour me tenir informée.
mais dans qq jours, car là je croule sous la fin de trimestre.
Bises très chaleureuses! pour tous! Et MERCI encore, Denis, de tout ce que tu fais...
Avignon

Hello tout le monde,

Je reçois un courriel de la fondation contre le chordome. Ça résume les progrès accomplis par cette fondation pour en arriver à régler le cas de cette maladie maudite.

Je le mets ici sans le traduire. Je me souviens que j'avais déjà essayé d'avoir un interlocuteur qui s'exprimait en français mais que ça avait été impossible, celui qui est comme le responsable pour l'Europe s'exprime en anglais aussi. Cette sorte de fondation est toujours à la recherche de dons et ce n'est pas l'esprit du site comme vous savez mais je mets quand même le message sans traduire parce que je pense que ça peut inspirer un peu d'espoir à ceux ou celles pris avec cette maladie avec qui on a échangé dans le passé.

Si quelque chose vous intéressse dans ce message ou si vous avez des questions, vous pouvez toujours en parler ici et on essaiera d'y répondre.

---



Dear Denis,

2014 has been a year of unprecedented progress in our mission to improve the lives of those affected by chordoma and lead the search for a cure. As the year draws to a close, I want to take a moment to share with you some of our most important accomplishments and new initiatives planned for 2015.

This year, thanks to record support from the chordoma community, for the first time we invested more than $1 million in research, including grants to world-class institutions such as Johns Hopkins University, Memorial Sloan Kettering, Massachusetts General Hospital, and the Jackson Laboratory.

We are also nearing our long-standing goals of creating collections of tumor tissue, cell lines and mouse models that are so critical for research. And, with these vital resources becoming available to the scientific community, we are beginning to move past one of the greatest barriers to progress, throwing open the door to chordoma research in many more labs. As described in the update below, this recent surge in research has produced a number of exciting discoveries, some of which point to new treatment possibilities for chordoma patients.

Looking ahead, we are now working with companies and leading physicians to plan a series of upcoming clinical trials that will put these new treatments to the test – including at least two clinical trials in 2015. Additionally, I am pleased to share that in 2015 we plan to greatly enhance our services to the chordoma community by beginning a Patient Navigation Service, co-hosting Regional Community Conferences in partnership with major medical centers, and developing practical educational resources to help address common patient questions and challenges.

With these promising initiatives on the horizon, I am certain that the potential to make a tangible impact on the lives of those affected by chordoma has never been greater. But, to do so, we need everyone in the chordoma community to be fully invested. Your support is vital to our success, and we would be truly grateful if you would help us accelerate the pace of progress in the year ahead by making a tax-deductible contribution to the Chordoma Foundation today.

To learn more about the impact of your support, I invite you to read on to the year-end update below. And, as always, please be in touch with us if there is anything we can do to help you, or if you would like to explore ways to contribute your talents or resources to advance the Foundation’s mission.

Thank you again for being part of our team and best wishes for a healthy and happy holiday season!

Sincerely,
Josh

Josh Sommer
Executive Director

P.S. When you donate, please consider making a recurring monthly gift - what we call a “Perseverance Pledge” - as this gives us the predictable revenue needed to commit to important multi-year projects.
Donate to accelerate the search for a cure!

Thank you for your support


2014 has been a year of record research achievements
We expanded access to vital resources for the international research community. For example, we:
•Enrolled the 100th participant in our Biobank – a centralized repository of tumor tissue vital for research.
•Awarded four $10,000 prizes for new chordoma cell lines contributed to our Cell Line Repository, reaching 7 lines towards our goal of 10.
•Launched a repository of Patient-Derived Xenograft (PDX) models (mice grafted with human tumors) that are used for proof of concept studies that pave the way for clinical trials.
For the first time we invested more than $1 million in cutting edge research, including:
•A personalized medicine initiative at Memorial Sloan Kettering Cancer Center, where an interdisciplinary team is working to guide treatment of chordoma based on the unique genomic profile of each patient’s tumor.
•Screening combinations of drugs in mouse models at Johns Hopkins University.
•A partnership with the Jackson Laboratory to create genetically engineered mouse models.
•A project at the University of Maastricht in the Netherlands to analyze the role various proteins play in the development of chordoma.
We helped enable a series of upcoming clinical trials by:
•Advocating for chordoma patients to be able to participate in a clinical trial of a novel immune therapy targeting brachyury at the National Cancer Institute. Promising early results of this trial were presented at the Connective Tissue Oncology Society annual meeting in Berlin, Germany.
•Hosting a roundtable discussion including over 20 leading oncologists, pharmaceutical companies and FDA officials to develop a strategy for facilitating drug approvals for chordoma.
•Working with investigators and companies to design and initiate six new clinical trials for chordoma in the next two years.

“We were able to rapidly enroll patients with chordoma in a yeast-brachyury vaccine (GI-6301) trial, and have seen evidence of anti-tumor effect in some of those patients. Based on these results, we are planning a phase 2 study with this vaccine.” - Chris Heery, MD, National Cancer Institute


A year of redoubled commitment to serving the chordoma community
•We conducted our first Chordoma Community Survey to better understand the needs of patients and caregivers and used feedback from more than 720 respondents to enhance the programs and services we offer.
•We designed a Patient Navigation Service that we will launch in 2015 to provide ongoing, personalized guidance and support to patients and caregivers from a knowledgeable medical professional.
•We co-authored the first worldwide consensus guidelines on best treatment practices for chordoma.


A year of building capacity to realize upcoming opportunities


“ The Uncommon Gran Fondo held in September on Mount Desert Island in Acadia National Park was a terrific success in bringing together chordoma survivors, research scientists from the JAX laboratories, members of the Chordoma Foundation and dozens of dear friends. Together we raised more than $20,000 to help fund the Chordoma Foundation, and sustain the hope inspiring work they do every day!” - Chris Kuhn, chordoma survivor

•We formed a Medical Advisory Board (MAB) comprised of leading chordoma physicians to guide our clinical research and patient services strategies. Working with our Scientific Advisory Board, the new MAB will also help us evaluate and prioritize the most promising clinical trials.
•We hired our first Chief Development Officer to lead our fundraising and community engagement efforts and help us secure the resources we will need to accelerate chordoma research and position the Foundation for future growth.
•We strengthened the chordoma patient and physician network in Europe by hosting our second European Community Conference organized by our Europe-based volunteers.
•Our dedicated supporters raised more money than ever before through bike rides, bowl-a-thons, golf tournaments, cocktail parties, and more. For the first time, three events brought in over $20,000 each!


European Community Conference in Frankfurt, Germany

What’s Next? In 2015, with your support, we will:
Continue to advance the full spectrum of research and development needed to find effective treatments:
•Distribute tissue samples, cell lines, and mouse models to fuel research in labs throughout the world.
•Launch a preclinical drug screening pipeline that will enable any researcher or company to easily test drugs in chordoma models.
•Initiate and support at least two clinical trials for chordoma patients.
•Begin developing drugs that directly inhibit brachyury, a gene that plays an important role in driving chordoma and other cancer types.
Enhance our services to the Chordoma Community:
•Host a series of Regional Community Conferences in partnership with top medical centers to educate, support and connect more chordoma patients and families.
•Begin a Patient Navigation Service to help patients and caregivers get the best care possible and overcome practical challenges posed by chordoma.
•Develop treatment guides and educational materials tailored to patient needs at each stage of the disease.

Donate to accelerate the search for a cure!

Thank you for your support

Bonjour les Espoirs .Voilà donc décembre avec le froid , la nuit tôt, la neige mais aussi bien sur les fêtes de fin d année .
Je suis sur une tablette ce qui expliquera un message peut être moins bien rédigé vu que je ne connais pas toutes les subtilités
Je pense à vous régulièrement .
J espere que vous aurez envie de donner des news .
Je m absente une semaine mais avec la tablette je pense pouvoir vous lire
À bientot donc