« Myeloma is a marathon: Until we find a cure we run for our lives, with no finish line in sight! »
November 13, 2016: Charles-Louis d’Orléans is once again running the marathon of Athens for DGMRF. Thank you my friend for your continuous and renewed support to this cause! Thank you so much also Francois, Gregoire and Yves for participating to this marathon and helping support Myeloma !!
November 6, 2016: Lorenzo Lorenzotti today ran the New York City marathon on behalf of the de Gunzburg Myeloma Research Foundation.
Thank you Lorenzo for proving us your continued support to our cause to fight myeloma, the last totally incurable form of cancer.
Your everlasting friendship and care not only helps us towards a cure but inspires us every day in our battle: We need it!
May 7, 2016: Sophie Smith is running the half-marathon of Bridgehampton again on behalf of DGMRF. Thank you Sophie for your eternal support. We hope all myeloma patients could enjoy as much perseverance in the long run like your dedication to the cause.
April 30, 2016: Interview of Mr. Vivien de Gunzburg by Dr. Paul Richardson, Myeloma Center, Dana-Farber Cancer Institute (Harvard) during The 2nd World Congress on Controversies in Multiple Myeloma taking place in Paris.
April 24, 2016: Guillaume Houze is running the marathon of London for DGMRF. Thank you old brother for your help for this new cause you decided to support!
|“I am choosing to support the de Gunzburg Myeloma Research Foundation (“DGMRF”) during my London Marathon run this sunday with the goal of helping bring awareness to both the need to find a cure for myeloma (also called Kahler disease), and the good work that DGMRF is doing in funding and sponsoring doctors and their teams doing research on myeloma.
My brother, Vivien de Gunzburg who started DGMRF is a fighter of the myeloma which he carries with him. His battle continues and his resolve has strengthened. He is an inspiration to me and many others who know and love him. With more awareness to what DGMRF is doing and with the generosity of those moved to help the foundation, more doctors and their teams can be funded to further research, and find a cure.
There are so many amazing things happening in cancer research today, and so many steps forward that have been made in many forms of cancer, that the ability to fund targeted research on very specific type of cancer has become increasingly important to arrive at breakthroughs and eventual treatment. Being aware of myeloma to begin with, and not confusing it with melanoma…is already a good start. Understanding a little more about the cancer and what is being done in terms of research and funding for advancing any possible breakthrough is the next step.”
November 8, 2015: DGMRF is extremely honored to announce that Charles-Louis d’Orleans will be running the marathon of Athens on behalf of the Foundation. Thank you Charles-Louis for your everlasting friendship and care, and such willingness to help our cause regarding myeloma. Congratulations for such effort and elegance. You both (if only!) inspire us and bring respect to our cause. Your run is timely!!!
« It is with great pleasure, drive and honor that I am running the 2015 Athens marathon on behalf of DGMRF and for my long time and dearest friend Vivien de Gunzburg.
Myeloma is one of the oldest forms of cancer, which after thousands of years remains totally incurable and barely noticed.
This is one of the last diseases where real value can still be added, and where one can still make a substantial difference. People also need to come together to fight this, like they have with other diseases, as this is the way we always achieve change in everything.
Those like Vivien that have survived more than 10 years are lucky but also create their own luck by trying to understand such enigma that scientists struggle with, and by having dedicated resources to create and try to bring constructive alternatives actively such as DGMRF.
It is this energy, dedication and goal to overcome the impossible that broadens our mind and makes us achieve great endeavours.
I wanted to add a small brick to the wall of this complicated yet mind challenging puzzle. Helping myeloma, DGMRF and Vivien represents supporting a fundamental and honourable cause. This is a life changer and saver that I am so glad to participate to. And « running » not away but to confront and get through the finish line in time is the right thing to do.
Charles-Louis d’Orleans »
November 1, 2015: Lorenzo Lorenzotti will run the New York marathon on behalf of DGMRF. Thank you Lorenzo for your help and friendship, and most of all for this true personal achievement and breakthrough. The New York marathon is indeed one of the hardest and a lifetime experience! Run Lorenzo, run!
“I am choosing to support the de Gunzburg Myeloma Research Foundation (“DGMRF”) during my New York City Marathon run this year with the goal of helping bring awareness to both the need to find a cure for myeloma (also called Kahler disease), and the good work that DGMRF is doing in funding and sponsoring doctors and their teams doing research on myeloma.
Vivien de Gunzburg who started DGMRF is my good friend and a fighter of myeloma which he carries with him. His battle continues and his resolve has strengthened. He is an inspiration to me and many others who know and love him. With more awareness to what DGMRF is doing and with the generosity of those moved to help the foundation, more doctors and their teams can be funded to further research, and find a cure.
There are so many amazing things happening in cancer research today, and so many steps forward that have been made in many forms of cancer, that the ability to fund targeted research on very rare types of cancer has become increasingly important to arrive at breakthroughs and eventual treatment. Being aware of myeloma to begin with, and not confusing it with melanoma…is already a good start, as it was with me the first time I heard the word. Understanding a little more about the cancer and what is being done in terms or research and funding for advancing any possible breakthrough is the next step.
It is in this spirit of discovery and true friendship that I dedicate my 26 miles on November 1st 2015 to DGMRF and to Vivien.
May 9, 2015: Sophie Smith and her friends Ellen Benveniste and Liz Alber once again run the bridgehampton Half on behalf of DGMRF. This is a fantastic continued support of the Foundation and all those battling Myeloma. This incredible effort and time dedicated to us brings amazing awareness and help to the cause.
Sophie, Liz, Elle: We’ll never thank you enough!
|« Friends and Family, as you may remember, last year I, along with Liz and Ellen, ran in the Inaugural Bridgehampton Half Marathon in support of my dear friend Vivien and the de Gunzburg Myeloma Research Foundation. We are running again this year to continue to support Vivien in his battle against this terrible disease, as well as the foundation to find a cure. Time is of the essence, and we cannot tell you how much your support means to us, Vivien, and all those who live with this incurable disease and continue to fight every day. »
Nov 2, 2014: Nicolas Macquin and other friends ran and finished the New York City Marathon on behalf of myeloma and DGMRF:
May 10, 2014: Half marathon run on May 10th in Bridgehampton for DGMRF by Sophie Smith and her friends Sonia Porter, Ellen Benveniste and Liz Alber:
« As some of you may know, this past September I ran my first half marathon to raise awareness as well as funds, for Smile Train, a non profit helping children in developing countries suffering from cleft lip and cleft palate. Based on the success of that race (thanks to the support I received from so many of you!), I have decided to run my second half marathon. This time, however, Sonia, Ellen, Liz and I will be running for another cause which hits much closer to home in a more discreet but still terrible way.
A dear friend of mine is battling multiple myeloma. Multiple myeloma is a rare non-curable form of blood cancer, with a median survival rate of approximately 5-7 years. Time is running out!
In this spirit, and fueled by the inspiration of my friend Vivien de Gunzburg continually fighting this uniquely challenging chronic cancer, I am taking on another challenge, this time in support of those affected by multiple myeloma, by running the inaugural half-marathon of Bridgehampton, NY on May 10th, for the benefit of the de Gunzburg Myeloma Research Foundation (“DGRMF”).
Multiple myeloma is an immune system form of cancer. Indeed, multiple myeloma is a cancer of the plasma cells, which are a form of white blood cells that help your body fight infection by producing antibodies. In multiple myeloma, plasma cells grow out of control in the bone marrow, forming tumors mainly in the areas of solid bone as well as marrow. These bone tumors hence impede the body’s ability to make healthy blood cells and platelets, and create many more direct and indirect issues for the body, including bone fractures but also anemia, kidney failure, and infections.
DGMRF is a US non-profit foundation which selects the best teams specialized in fundamental/early stage research exclusively in myeloma.
Since there is currently no cure in the pipeline of any biotech/pharmaceutical company/hospital/laboratory, more research has to be done at a very early stage to be able to accelerate the finding of better treatments, and hopefully a cure.
DGMRF decided to first support Dr Paul Richardson (patient care) and Dr Constantine Mitsiades (laboratory research) and their teams within the Dana Farber Cancer Institute (“DFCI”) in Boston (Harvard Medical School).
DFCI is considered by many as the US leader in the field of myeloma by having participated in the discovery and contributed to the delivery of 8 new drug/drug approvals over the last 10 years (including key drugs such as Velcade, Revlimid and Pomalyst).
More generally, DFCI provides outstanding care to children and adults with cancer, while also advancing the understanding, diagnosis, treatment, cure, and prevention of cancer and related diseases.
DFCI has nearly 300,000 adult and pediatric patient visits a year and is involved in more than 700 clinical trials.
While myeloma has gained some awareness over the last decade, and numerous patients worldwide fight for their lives and hope for a cure, multiple myeloma remains a relatively unknown form of cancer to the public in general.
The terrible death of former Congress-woman Geraldine Ferraro, who battled this disease during 12 years, became one of the faces of the disease and the essence for so many other patients worldwide to hope for a better future.
Tom Brokaw, a well-known figure in televison media more recently announced that he also had been diagnosed with multiple myeloma.
So are in fact many other people (approximately 22 000 new cases are diagnosed every year in the US alone, with an average of 75 000 people currently living/surviving with it, and tragically 11,000 still dying every year).
Importantly, as people grow older, more people will develop cancer in their life, with multiple myeloma estimated to reach a peak of 9% of the population as they surpass their 80’s.
Most commercial entities still consider multiple myeloma a limited indication with currently a small market size, profit potential, and return on their medical investments.
Medical research for such « orphan diseases » imperatively needs to be conducted by leading groups within organizations such as DCFI and funded by generous donations from DGMRF and other philanthropists and visionaries like you.
I’ve chosen to support DGMRF as a result of the unconditional and exemplary dedication with which Vivien has been fighting his very courageous battle against myeloma, his personal ethics, and the incredible work the organization he created does. DGMRF (i) finds the best specialized medical teams in the US, (ii) shares kind help and advice/recommendations with any person they know is affected by multiple myeloma, (iii) directs 100% of the money raised directly to research (thanks to the founders financing all expenses), and (iv) ensures lack of conflict of interest and best practice.
Also having chosen DFCI as the first group to support, and the amazing care DFCI has been demonstrating to these friends who have myeloma shows that DFCI is really one of the best teams in the field, and that DGMRF knows how to make the right choices and use the funds as efficiently and well as possible to boost myeloma research.
Because it is Vivien’s 40th birthday in a few days (which will also be his 10 years surviving myeloma anniversary!), I wanted to dedicate this run to him. I wish for Vivien to always move faster than the disease, and to manage to get away.
Celebrating Vivien’s birthday by helping his foundation will also hopefully be the best present possible by giving him the strength to continue his long battle, at a time when he relapsed for the second time.
Should you be sensitive to cancer and/or myeloma, we would really need your help to support research regarding one of the last incurable forms of cancer.
A donation of any size to DGMRF for my run, Vivien’s birthday or to support myeloma research in general would greatly increase awareness of this sicknes and advances in treatments, and directly help these friends and people touched by this terrible disease.
The de Gunzburg Myeloma Research Foundation is U.S. 501(c)3.
Any donation is tax deductible for US tax payers.
Donations to DGMRF will be directed to myeloma research under the direction of Dr. Paul Richardson and his team at the Jerome Lipper Center for Multiple Myeloma and LeBow Institute for Myeloma Therapeutics at DFCI, and will be used exclusively for research in myeloma and cutting edge translational research.
Please support us and give via my race fundraising page:
Please make a donation to DGMRF!
So for all the people that are suffering from myeloma, those that unfortunately could or will face it, our loved ones such as Vivien, and more generally for the sake of myeloma and cancer research: Thank you for your kind help, thoughts and generous support!!
Sophie Smith »
|Sonia Porter, Ellen Benveniste, and Liz Alber|
The de Gunzburg Myeloma Research Foundation (“DGMRF”) was established to finance research programs from and within third parties’ leading medical institutions. The DGMRF is a non-profit private foundation which has tax exempt status under section 501(c)(3) of the United States of Americas’ Internal Revenue Code.
Any information and/or data available on the website of the DGMRF (the “Website”) is accessible to anybody. This Website does not purport to contain all the information (the “Information”) to understand and/or evaluate all of the factors regarding myeloma. Any reader hereof should conduct his/her own investigation and analysis on the disease, including as the case may be, based on the specificities relating to the potential myeloma patient.
The DGMRF has not independently verified the Information contained on the Website. The DGMRF makes no representation or warranty of any kind, express or implied, as to the accuracy or completeness of the Information or any other written or oral communication transmitted or made available. The DGMRF and their representatives hereby expressly disclaim any and all liability based, in whole or in part, on such Information, including without limitation regarding (a) the quality, accuracy, timeliness, or completeness of the Information, and (b) fitness for a particular purpose. In no event shall DGMRF be liable for any direct or indirect, incidental, exemplary, special, punitive, or consequential damages relating to the use of this Information.