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 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: 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 can approve higher spending on specific donations for research and developments (vs. a statistical approach) based on a qualitative assessment of an 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 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”).

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.
Diagnostic was done through blood, urine, whole body radiographies, MRI, CT/PET scans as well as, scintigraphy, biopsy and bone marrow works.

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 from the specialized myeloma 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 group 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 area (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 cells 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 (it was decided that it would be more efficient than Thalidomide) and Dexamethasone (Cortisone/Steroïds).

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 12 million stem cells where collected for a future graft;
• Performed a diagnostic with a new set of images (PET/CT scan) mid-September to see the evolution,
• Underwent 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 (1 year later).

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 approximative 150 000 plasmocytes in Mr. de Gunzburg’s body (bone marrow).

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 then been acknowledged as being in temporary complete remission.

In September 2013, Mr. de Gunzburg was diagnosed with his second relapse of his myeloma.

After a number of analyses in 2013 and 2014 (CT PET Scan, scanners, MRI, radios, blood and bone marrow tests, etc.), Mr. de Gunzburg’s relapse was confirmed in September 2014. Myeloma has become active again. In October 2014, Mr. de Gunzburg’s myeloma was highlighted by a peak of protein along with 5 visible lesions in his bones, spread throughout his body. In addition, a number of plasmocytes were discovered in Mr. de Gunzburg’s bone marrow. As a result, in March 2015, Mr. de Gunzburg started chemotherapy again, which this time included three molecules (Dex, Velcade and Revlimid). Revlimid – the evolution drug from Thalidomide – was added to the previous chemo combination. Mr. de Gunzburg did three cycles of this « cocktail ». After these cycles, Mr. de Gunzburg was to undergo an autologous stem cell transplantation (ASCT). Such graft was performed with stem cells collected from Mr. de Gunzburg in 2011. Cells were collected at Hopital Saint-Louis in Paris, 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 estimated to be usable. 12 million stem cells were collected in 2011, and 6 million were be used for the ASCT in May 2015. After the injection of chemotherapy Melphalan to reset his immune system, Mr. de Gunzburg got an infusion of his own stem cells. Mr. de Gunzburg spent more than three weeks in a sterile chamber (« bubble »). It took Mr. de Gunzburg one month to recover. In September 2015, Mr. de Gunzburg continued treatments in the form of “consolidation” by doing another two cycles of the same three molecules combination. In November 2015, Mr. de Gunzburg continued some form of “maintenance” by taking Revlimid.

Revlimid maintenance lasted approximately 1 year until August 2016 when Mr. de Gunzburg was rushed to a hospital having been dehydrated. After 3 days in ER/intensive care Mr. de Gunzburg’s immune system was estimated too low lo continue maintenance. Treatments were stopped. Since Mr. de Gunzburg has been in temporary complete remission.

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 date.

Relapses are nevertheless unfortunately rarely avoidable in myeloma, and tend to be in a stronger and/or mutated form, with chances of survival consequently 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

Vivien de Gunzburg is the Founder, President, and Managing Partner of Ceres Infrastructure Asset Management LLC, the manager of Ceres Infrastructure Private Debt Fund. Based in the U.S., the fund is dedicated to providing and structuring long-term financings for the renovation of large core infrastructure assets in the U.S.

Prior to Ceres, in 2003 Mr. de Gunzburg established the Findercod group in the UK, Belgium, and France. Findercod provides advisory services in the areas corporate finance (including solutions to corporates such as project-based long-term (re)financing), private equity, and asset management.

Prior to founding Findercod, in 2002, Mr. de Gunzburg participated to the creation of Stephens Financial Group (“SFG”) the NY based arm of Stephens Group. SFG was tasked with large-cap mergers and acquisitions. Mr. de Gunzburg served as Vice President in the M&A advisory practice, covering clients in the industrial, aerospace, homeland security, and life sciences areas. He was involved in the $13.4bn merger of Northrop Grumman &TRW and the simultaneous sale of TRW Automotive to The Blackstone Group for $4.7bn. He was also involved in the origination and analysis of private equity investment opportunities for the Stephens Group. The Stephens family of Little Rock (AK), is one of America’s families with a long history of investing, operating, banking and political involvement and known to have managed the IPO of Walmart.

From 1998 to 2002, Mr. de Gunzburg held various positions within the Banking Group of Lazard Frères & Co. LLC (now Lazard) in New York. In 2001, Mr. de Gunzburg was a Senior Associate tasked to work with Lazard’s rain maker Ambassador Felix Rohatyn in the creation of Rohatyn Associates. During his tenure at Rohatyn Associates Mr. de Gunzburg helped originate deals for clients such as Comcast (leading to the $72bn merger of Comcast with AT&T, and HSBC’s acquisition of Household International for $16bn), Suez, Sodexho, LVMH, Publicis, Fiat, Fimalac, United Technologies, and Pfizer. Prior to working with Ambassador Rohatyn, in 2000, Mr. de Gunzburg was 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. His transactions experience during that time included Pfizer’s hostile acquisition of pharmaceutical Warner-Lambert for $116 bn 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 $45bn (1999);which later was merged with Sanofi, and the sale of the remaining 80% of Pioneer Hi-Bred to DuPont for $7.7bn (1999).

Prior to joining Lazard, in 1997 Mr. de Gunzburg joined Rothschild & Cie. Paris as an Analyst in the M&A department where he advised 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. In 1993, Mr de Gunzburg 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 and has notions of Japanese, Russian and German.  He is a Young Leader (class French President Emmanuel Macron) and member of the Board of Directors of the French-American Foundation in France and in the U.S., the founder and President of the de Gunzburg Myeloma Research Foundation (DGMRF) in the U.S., a Member of the Executive Committee and Treasurer of French Foundation for the Research on Myeloma and Gammopathy (FFRMG) in France, Vice-President of ORT Belgium, Board Member of ORT France, Member of the Educative Committee of Terra Sancta Museum in Jerusalem, Vice President and member of the General Committee of The Travellers club in France.

About DGMRF: DGMRF – Presentation., DGMRF – Donors

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.

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