The de Gunzburg Myeloma Research Foundation was officially incorporated as a Delaware entity in March 2012.

The nature of DGMRF is to finance excellence objectively, and give a chance to research by providing them with a new and additional source of financing to offer a better future for patients suffering from cancers and especially myeloma.

Because DGMRF was started and its board composed by family members, it enjoys the fresh eye and objectivity that any patient or donor should expect: understanding transparency and visibility of research. It can take a longer view of its value added but with the necessity to still produce short term results. It uses very conservative accounting standards and can approve higher spending on specific donations for research and developments (vs. a statistical approach) based on a qualitative assessment of the innovative project. Being smaller, DGMRF is also more nimble and flexible, and can make decisions faster if need be than a larger bureaucratic entity.

Because DGMRF is a non-profit organization with clearly established by-laws and set for multi-generations with long term perspective, it does not suffer from operational problems arising from other actor’s succession problems.The origins of DGRMF are actually linked to the medical history of its founder Vivien de Gunzburg.In 2003. Mr. de Gunzburg was diagnosed with a solitary plasmocytoma (a single myeloma tumor) in the seventh cervical bone (“C7”).

Diagnostic was done through blood, urine, whole body radiographies, MRI, PET/CT scans as well as, scintigraphy, biopsy and bone marrow works. Following symptoms in his left arm, Mr. de Gunzburg suffered mechanical issues due to the C7 nerve being pinched by the plamocytoma tumor having damaged and broken through the C7.

After evaluation by both Pr. Jean-Paul Fermand Head of the Immuno-Hematology department at Hospital Saint-Louis in Paris (FRANCE), Pr. Gérard Saillant, Head of Orthopaedic at Hospital Pitié-Salpêtrière in Paris (FRANCE) and Dr. Paul Richardson at the Dana-Farber Cancer Institute (Harvard) in Boston (MA, USA), Mr. de Gunzburg decided to both surgically consolidate the spine (which was weakened by the tumor), and then treat the disease itself.

While immediately undergoing light blood solutions (Zometa/Bisphosphonate) to consolidate the overall bone structure while creating an instable environment for the malignant plasma cells:

  • In April 2004, Mr. de Gunzburg was operated by Pr. Gérard Saillant at Hospital Pitié-Salpêtrière in Paris to remove the back part of the cervical 7 (hereby removing 70% of the tumor), and consolidate the vertebra with the architectural implementation of two titanium plaques (C6 to T1)in order to prevent a mechanical accident; and
  • In July 2004, Mr. de Gunzburg was treated regarding the disease itself with radiotherapy, also directed to the C6 to T1 (with rays moving around, hence avoiding the spine and potential consequences to the bone marrow)by Pr. Jean-Marc Cosset at the Institut Curie in Paris (FRANCE).

Following those treatments, Mr. de Gunzburg had been disease-free until 2010.

In March 2010 (6 years after), Mr. de Gunzburg relapsed, following the outcome of a regular laboratory check-up, which highlighted the resurgence of the M-protein reflecting the presence of plasma cells in his body.

A total evaluation was performed again by Pr. Jean-Paul Fermand.

Final diagnosis was the revelation of two distinct plasmocytomas (one in the 8th rib, and the other in a lymph node below the right collar/supraclavicular bone).These plasmocytomas had not yet created actual tumors. They were a visible aggregation of malignant plasmocytes. The biopsy on the extra medullary node revealed a composition of the node and nature of the cell that proved an actual mutation of the disease.

The fact that (i) this was a relapse (second time Mr. de Gunzburg was suffering an active development of this disease), (ii) the multiplicity of plasmocytomas (two) at that time, as well as (iii) one of the plasmocytomas being extra medullar (which is unusual since this is a disease that normally forms tumors in bones hence the mutation of some of the plasmocytes -) highlighted the aggressive form of Mr. de Gunzburg’s refractory myeloma in 2010.

Mr. de Gunzburg, along with Pr. Fermand and Dr. Richardson, decided to start a treatment based on both chemotherapy and radiotherapy.

The chemotherapy’s molecule agreed was: Velcade (stronger than Thalidomide) and Dexamethasone (Cortisone).

Mr. de Gunzburg hence:

  • Started with a first cycle of Velcade and Dexamethasone (twice a week for two weeks, then one week off, for 3 rounds) with Pr. Jean-Paul Fermand at Hospital Saint-Louis in Paris in July and August 2010; then
  • did a stem cell collection end of August 2010 (one week after the end of the last Velcade injection) where approximately 10 million stem cells where collected for a future graft; and
  • a new set of images (PET/CT scan) mid-September to see the evolution,
  • followed by radiotherapy on the two plasmocytomas by Pr. Jean-Marc Cosset at Institut Curie in Paris in October 2010; and
  • another 2 cycles of chemotherapy, using Velcade and Dexamethazone
  • Treatments finished in August 2011.

In October 2011, no aggregation of plasmocytes was visible or could be detected either through standard blood work or images, suggesting the positive outcome of the treatments.

Nevertheless in January 2012, an advanced test and analysis based on the bone marrow collection done by Dr. Paul Richardson and Dr. Constantine Mitsiades at the Dana-Farber Cancer Institute in Boston suggested the survival of still an approximated estimate of 150 000 plasmocytes in Mr. de Gunzburg’s body.

After nearly six months of parallel medicine (nutrition, acupuncture, etc.), the similar advanced test done by Dr. Paul Richardson and Dr. Constantine Mitsiades at the Dana-Farber Cancer Institute based on another bone marrow collection and analysis (in addition to blood tests) in June 2012 could not prove or suggest the existence of any plasmocytes left in Mr. de Gunzburg’s body.

Mr. de Gunzburg has since been acknowledged as being in temporary complete remission.

In September 2013, Mr. de Gunzburg was diagnosed with his second relapse of his myeloma. Mr. de Gunzburg is currently assessing the new form of his myeloma, which will determine new treatments.

After a number of analyses in 2013 and 2014 (CT PET Scan, scanners, MRI, radios, blood test, bone marrow tests, etc.), Mr. de Gunzburg’s relapse is confirmed in September 2014. Myeloma has become active again. In October 2014, Mr. de Gunzburg’s myeloma is highlighted by a peak of protein along with 5 visible lesions in his bones spread throughout his body. In addition, a number of plasmocytes are discovered in Mr. de Gunzburg’s bone marrow. As a result, in March 2015, Mr. de Gunzburg started chemotherapy again, which this time includes three molecules (Dex, Velcade and Revlimid). Mr. de Gunzburg will do three cycles of this combination. After these cycles, Mr. de Gunzburg will undergo an autologous stem cell transplantation (ASCT). Such graft will be performed with stem cells collected from Mr. de Gunzburg in 2011. These stem cells were collected at Hopital Saint-Louis in Paris from Mr. de Gunzburg in 2011, and were frozen to maintain cell viability until the need for stem cell re-infusion in case of relapse. Though these cells were collected long after Mr. de Gunzburg was diagnosed with the disease in 2003, and hence are less healthy than umbilical cord stem cells which are completely pure, healthy and vigorous, these stem cells were collected after chemotherapy treatments in 2011 and should be usable. 12 million stem cells were collected in 2011, and 6 million will be used for the ASCT in May 2015. After the infusion of his own stem cells, Mr. de Gunzburg will have to spend two to three weeks in a sterile chamber. It will take Mr. de Gunzburg one to two months to recover. In September 2015, Mr. de Gunzburg will continue treatments in the form of “consolidation” by doing another two cycles of the same three molecules combination. And in November 2015, Mr. de Gunzburg will probably continue some form of “maintenance” by taking Revlimid for another two years approximately.

The history of Mr. de Gunzburg’s myeloma is one of many people’s that have so far successfully survived myeloma, and lived through and have undergone different and recurring various treatments to this date.

Relapses are nevertheless nearly unfortunately rarely avoidable, and tend to be in a stronger and/or mutated form, with consequently chances of survival decreasing every time.

The nature of this chronic, orphan, rare and incurable blood and bone marrow cancer is nonetheless by nature an overhang in the lives of patients and their families. It also reflects the lack of full success by the medical and social/government in this field.

Treating a form of cancer and trying to understand takes time and resources (including away from one’s normal activities). But it gives additional reasons to fight against it and gives another perspective on other matters, and even potentially balance.

Mr. de Gunzburg decided to devote part of his time, energy and means to take advantage of his temporary remission to fight myeloma to its roots, by starting a non-profit in the United States in order to finance leading research teams within acknowledged established institutions in the field of cancer and myeloma, and help patients like him live better and longer with this disease, and hopefully ultimately help find a cure to one of the oldest forms of cancers.

 

Biography:

Vivien de Gunzburg

Mr. de Gunzburg is the Founder and Managing Partner of Findercod, established in 2003. Findercod is the third financial advisory services company that Mr. de Gunzburg participated to the creation of. Present in the UK, Belgium and France, Findercod provides services in the corporate finance (including long term alternative financing solutions – or “DAFS” – to corporates), private equity and asset management areas.

In 2002, Mr. de Gunzburg was involved in the creation of a second investment banking start-up: Stephens Financial Group (“SFG”). SFG was set up to be the large capitalizations New York mergers and acquisitions arm of the Stephens Group, which belongs to the Stephens family from Little Rock (AK, US), one of America’s most successful investing, operating, banking and political families (seeded Wall Mart, financed President Bill Clinton, General Wesley Clark, etc.). While at SFG, Vivien de Gunzburg worked as a Vice President in the M&A advisory practice, serving clients in the industrial, aerospace, homeland security and life sciences areas. Mr. de Gunzburg was involved in the Northrop Grumman/TRW $13.4 billion merger and simultaneous sale of TRW Automotive to The Blackstone Group for $4.7 billion. Mr. de Gunzburg was also involved in the origination and analysis of private equity investment opportunities for the Stephens Group.

From 1998 to 2002, Mr. de Gunzburg was part of the Banking Group of Lazard Frères & Co. LLC in New York. While at Lazard, Mr. de Gunzburg was, in 2001, a Senior Associate dedicated exclusively to and worked in duo for Ambassador Felix Rohatyn, while participating to the creation of Rohatyn Associates, where clients included Comcast, HSBC, Suez, Sodexho, LVMH, Publicis, Fiat, Fimalac, United Technologies and Pfizer. Prior to this assignment, Mr. de Gunzburg was, in 2000, an Associate in the Industrial and Retail Group at Lazard. From 1998 to 2000, Mr. de Gunzburg was an Analyst in the Lazard Life Sciences Group, working for Kenneth Jacobs, currently worldwide Chairman of Lazard. Transactions executed included Pfizer’s hostile acquisition of pharmaceutical Warner-Lambert for $116 billion and simultaneous divestiture of lice treatment Rid to Bayer for $85 million (2001), the sale of engineered nutrition food MET-Rx to Rexall Sundown for $106 million (2000), Hoechst and Rhône-Poulenc merger-of-equals into Aventis for $45 billion (1999), and the sale of the remaining 80% of Pioneer Hi-Bred to DuPont for $7.7 billion (1999).

Prior to joining Lazard, Mr. de Gunzburg worked at Rothschild & Cie. in Paris in 1997 as an Analyst in the Mergers and Acquisitions department advising clients in the industrial, financial, real-estate and technology sectors. In 1995 and 1996, he worked at Société Générale as an analyst in the Credit department both in Madrid and in Hong Kong. In 1994 Mr. de Gunzburg worked at Sanofi Beauté in Barcelona; and prior to that, in 1993, worked at Republic New York Corporation (Republic National Bank and Safra Bank) in the Mergers and Acquisitions department in New York.

A French and Belgian national, Mr. de Gunzburg received a MSc. in financial engineering from E.S.L.S.C.A. and a BA with honors from the Institut Supérieur de Gestion in Paris. Mr. de Gunzburg is fluent in French, English and Spanish, with notions of German, Japanese and Russian.

Mr. de Gunzburg is a Young Leader and member of the Board of Directors of the French-American Foundation in France, the founder and President of the de Gunzburg Myeloma Research Foundation in the USA, a member of the Board of Directors of Myeloma UK in the UK, a Member of the Executive Committee and Treasurer of FFRMG (French Foundation for the Research on Myeloma and Gammopathy) in France, a member of the Board of Trustees (BoT) of World ORT (the world’s oldest and largest NGO dedicated to education) and Chairman of ORT-IC (International Cooperation) in Switzerland and the UK, President of Union ORT in France and a member of the Board of Directors of ORT France, Member of the board of directors of ORT Belgium, a Vice President and member of the General Committee of The Travellers in France, and Co-Founder, shareholder and ex CEO of IRO (a med-tech company developing a machine combining diagnostic and cure) in France. Mr. de Gunzburg is also the President of AQDE (Association Quartier Dauphine Environnement) and member of the Board of Directors of COBB (Coordination pour la Sauvegarde du Bois de Boulogne et de ses Abords) both to protect and preserve the 16th district of Paris, the Bois de Boulogne and its surroundings.

About DGMRF: DGMRF – Presentation.

Disclaimer

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.