The week before President Barack Obama’s inauguration in January 2009, Steve and I visited the Brooksville, Florida, office of U.S. Representative Ginny Brown-Waite. During the couple of days before the meeting, I spoke with Dr. Richard Veech and Dr. Theodore VanItallie to get their input on the important points to put together in a concise presentation. While we waited for Rep. Brown-Waite to arrive, Shirley, a liaison in her office, spent time with us, hearing about the events that had brought us there. She mentioned that she had a friend, now fifty-eight years old, with Alzheimer’s disease, whom she saw over the holidays at a party and whom she did not expect to survive the year.
Representative Brown-Waite, a down-to-earth, straightforward individual, spent an hour and a half with us, listening intently to Steve’s story and the basic science of ketones. She read with us some of the e-mails I received from people whose loved ones had improved. She promised to speak with Drs. Veech and VanItallie and investigate why the National Institutes of Health had not funded the continuation of this research. We left satisfied with the discussion and the belief that she would move this forward.
The following week, Steve and I took a road trip to Gasparilla Island, in southwest Florida, to share information with Dr. VanItallie and devise some strategy of how to push this issue. Dr. VanItallie was schooled at Harvard and Columbia University in the 1940s. After he completed a medical residency and then a fellowship in nutrition, he collaborated in the formation of the Institute of Human Nutrition at Columbia, where he served as director of the Obesity Research Center. He has received many awards for his nutrition research. At the time of our visit, Dr. VanItallie was eighty-nine, in excellent physical condition, and actively engaged in the pursuit of science twenty-four years after most people retire to a couch.
Theodore B. VanItallie, M.D.
After lunch and a tour around the island, Dr. VanItallie, Steve, and I spent time trading research articles and other information. Dr. VanItallie’s idea was to have a scientific meeting and invite ketone researchers to make presentations, as well as representatives of foundations that might provide funding for the research. He envisioned the proceedings of the meeting would be published in a prominent journal. We thoroughly enjoyed our visit and drove home that evening.
Then a fortuitous event took place. Shirley, from Rep. Brown-Waite’s office, called me about two weeks after our visit to inform me that the husband of her friend with Alzheimer’s disease reported that his wife had a response to coconut oil that was “unreal.” She was now speaking in sentences again. I asked Shirley if she would share this information with the Representative and she said most definitely yes. She e-mailed me a copy of his message, which I then forwarded to Drs. Veech and VanItallie.
I decided to strike while the iron was hot and arranged a meeting during my next group of days off with Rep. Brown-Waite at her office in Washington, D.C., to include Dr. Veech. He, in turn, extended the meeting to include Dr. George Cahill, the physician who discovered that the brain could use ketones as fuel in the 1960s. Dr. Veech and Dr. Cahill are both Harvard-trained physicians and biochemists. Dr. Veech earned his Ph.D. at Oxford in England and trained with the quintessential biochemist George Krebs of Krebs cycle fame, and he later pursued a career in research with the NIH. Dr. Cahill served as director of metabolism at the Peter Bent Brigham and Deaconess Hospitals and later of the Howard Hughes Foundation, and he is a world-renowned expert in diabetes.
Richard L. Veech, M.D.
My sister Angela, my greatest support in all of this, came to our home with her husband a few days before the big meeting in Washington, D.C., to stay with Steve. With the meeting scheduled for 11:30 A.M. on Feb. 25, I took an early flight the day before in order to visit with Dr. Veech at his lab at the NIH in nearby Rockville, Maryland.
It was most exciting to finally meet Dr. Veech face to face. He is a tall, thin man, seventy-four at that time, personable, and genuine. He tells it like it is and faults himself for being less than diplomatic by nature. He made a point of taking me to the various labs to introduce me one by one to the members of his staff, several of whom are physicians. He had each of them explain their role in ketone research and share their most recent results. Two of the physicians, one an internist from Ghana, Dr. Osei-Hyeman, the other a neurologist from Japan, Dr. Kashiwaya (“Kashi”), spent time with me discussing Steve and his symptoms before and after starting the coconut oil/MCT oil regimen. Dr. Veech pulled out a small container of his ketone ester in crystalline form flavored with licorice and offered each of us a taste.
Later that night, Dr. Veech, Dr. Kashi, and I had dinner with Dr. Cahill. Like his colleague, Dr. Cahill is also tall and quite handsome, with more than a passing resemblance to the elder former President George Bush. We discussed the meeting planned for the following day, and I enjoyed listening to them reminisce about the many important scientists they have all known over the last half century or so.
The following morning, we met for breakfast and spent a couple of hours planning our strategy; then we took a taxi to Capitol Hill. We went through security to enter the Cannon Building, where Rep. Ginny Brown-Waite has her office. The security line came to a grinding halt when Dr. Veech pulled out his little bottle of ketones laced with licorice, which had to be thoroughly inspected, though he reassured the guard it was not poisonous or otherwise dangerous.
When we arrived at her office, we were advised that Rep. Brown-Waite was in the Capitol Building voting for the proposed Obama stimulus plan. We followed her aide underground and waited in the hallway while she was paged to come speak with us. Shortly thereafter, Rep. Brown-Waite emerged from the House Chamber. She immediately came up to me, shook my hand, and gave me a hug. She asked if I’d heard from Shirley about her friend’s amazing response to coconut oil and advised me that she herself had been sending out the article to everyone she could think of.
After introductions, Dr. Veech briefly presented his paper slides to the Representative and Dr. Cahill explained the importance of ketones in the evolution of humanity—without ketones, humans, with our large brains, could not have survived. Rep. Brown-Waite advised us that she considered Senator Bill Young of St. Petersburg, Florida, her mentor, and she wanted to get him involved in the process, since she was on the Ways and Means Committee as well as the Health Subcommittee and he was on the Appropriations Committee. She recommended that we draft a concise two-page report on the subject addressed to Senator Young and to her. She was paged to reenter the House Chamber to vote, and Dr. Veech gave the materials supporting his presentation to her aide. We followed her to the exit and left.
Left to right: George Cahill, Mary Newport, and Richard Veech in the Capitol Building, Washington, D.C., on Feb. 25, 2009.
We were all extremely pleased with the success of the meeting, however brief. Dr. Cahill took a taxi to the airport, and Dr. Veech and I had another enjoyable meal, toasting our success, and then he drove me to the airport where I caught a flight back to Florida.
This brief trip to Washington ranks very high among the most exciting days of my life.
A few weeks later, on March 20, Steve and I traveled to Washington to attend the Alzheimer’s Public Policy Forums, a two-and-a-half-day conference sponsored by the Alzheimer’s Association for the purpose of encouraging Congress to increase funding for disease research.
In preparation for the week in D.C., I arranged meetings with as many legislators as possible in order to enlist their help in getting funding for production of Dr. Veech’s ketone ester and make them aware of the potential for MCT oil and coconut oil to improve lives now.
PM, from the regional Alzheimer’s Association office in Florida, suggested that I contact someone in the Public Policy Office regarding coconut oil/MCT oil information. Believing this was a government office, I spoke with MS there, explained briefly the purpose of my call, and quickly sensed that he already knew about this. It did not take long, however, for me to realize this was a division of the Alzheimer’s Association, and I had a sinking feeling that I should not have made the call. I e-mailed the article and a number of related research papers anyway, hoping that MS would read them and perhaps grasp, and even embrace, the information. A few days later, I learned how wrong I was on all counts.
I also learned that Maria Shriver, the wife of then Governor Arnold Schwarzenegger, would be testifying at the annual U.S. Senate Special Committee on Aging hearing for Alzheimer’s disease, which we planned to attend as part of the Public Policy Forums conference. I called her office and faxed a cover letter and as much information to her as I could about ketones, stressing that this could be beneficial to her family members with Alzheimer’s (her father Sargent Shriver) and her uncle Senator Ted Kennedy, who was suffering from a brain tumor. (Both of them are now deceased.)
The District of Columbia, with temperatures in the thirties and forties, was still quite cold in mid-March for people from Florida. We left our bags at the hotel and took the Metro subway to Rockville. I led and Steve followed, not always pleased about the activity and confusion around us. Getting on and off trains was particularly distressing to him, since little time is allowed to muddle through the people and pass through the doors before they close. I learned that the best way to navigate was to hold hands, to give Steve more of a feeling of security. The push-and-shove, “hurryup” method only seemed to increase his confusion.
When we arrived at the conference room at the NIH, Steve met Dr. Veech for the first time, as well as Dr. Kashi and Dr. Osei-Hyeman. They were very interested in Steve’s condition and asked him many questions. Several others also attended from inside and outside the lab, many of whose faces were already familiar to me.
Dr. Veech had set up the conference beginning with me, so I gave a twenty-minute presentation about the progression of Steve symptoms and how I happened upon the information about medium-chain fatty acids and ketones, as well as Steve’s response to the oils. Dr. Veech and the others each gave short presentations, complete with slides, of the various aspects of ketone research they were engaged in and the results. One of the many new things I learned that afternoon was that, in addition to ketones, medium-chain fatty acids also appear to enter the brain circulation and may also be used as fuel by brain cells.
The next morning, Steve’s right big toe, which had bothered him the day before, was now extremely swollen and tender, poor timing since were planning on sightseeing. Nevertheless, we took the bus tour of D.C., and then I spent several hours in the evening preparing for meetings with various members of Congress scheduled over the next few days. Dr. Veech had given me packets of information for each of the legislators, including a number of the important research papers related to the subject of ketones.
Steve and I had two meetings scheduled for Monday morning, March 23. The first was with Glen Schlesinger in the office of Florida Senator Bill Nelson; the second was with Taylor Booth on behalf of Florida Senator Mel Martinez, co-chair of the Special Committee on Aging. At each meeting, as succinctly as possible, I told the story of Steve, his history of early onset Alzheimer’s disease, and how we came upon MCTs and their end-product ketones as a potential treatment for Alzheimer’s and many other diseases with the problem of glucose uptake.
I told them about how Dr. Veech was making the ketone ester in his lab; how he did not have a facility large enough, much less the funding for such a facility, to produce the ester in enough quantity to do human testing; and how he could achieve levels with the ester many times higher than is possible with coconut oil or MCT oil. I noted that bankrupt ethanol plants could easily be converted to ketone ester production. I mentioned how medium-chain fatty acids are very concentrated in human breast milk and added to all infant formulas, and how ketones are important to the growth and development of the newborn brain and may also provide protection for the adult brain. I stressed that many of our fighting soldiers sustain traumatic brain injuries and die or are left with severe disabilities that might be alleviated if they could only receive an intravenous form of this ketone ester immediately after sustaining the injury. I added that many people here at home who suffer these types of injuries would also benefit.
Steve told them how he had come out of the fog since talking the mixture of coconut oil/MCT oil and how life was so much better since we had made this “discovery.” I told them about my quest to make this information available to as many people as possible so they would have the opportunity to try it. I noted that we would appreciate any help they could give us with disseminating this information to the public and with obtaining or encouraging funding for Dr. Veech.
Taylor Booth from Senator Martinez’ office advised that we should try to get a meeting with Senator Herb Kohl, the majority co-chairman of the Special Committee on Aging, particularly since they were holding annual hearings on Alzheimer’s disease on Wednesday. We found the office for this Special Committee on the ground floor of the Dirksen Senate Building and spoke with MS about all of this. We learned that Joyce Ward, an aide in Senator Kohl’s office, would be the best person to talk with, but she was extremely busy preparing for the hearings and therefore unavailable. I asked if it was possible to testify at the hearing and was advised that the agenda was set. However, MS noted that I could submit written testimony. We left some of the information with her and e-mailed more to her later, along with a letter to Senator Kohl.
Monday afternoon, we took the subway to the Omni Shoreham Hotel, where the Public Policy Forums conference sponsored by the Alzheimer’s Association was taking place. The conference began with a Summit for Early Onset Alzheimer’s Disease, followed by a roll call of advocates by state and an orientation. Shortly after we sat down, a man sat down at our table whom I recognized from Chicago. He was even wearing the same suit and had the gold Alzheimer’s Association logo pin on his lapel. At that time, I suspected that his presence was security-related. This was just too much of a coincidence.
There were 500 people attending this conference, and most of them had a loved one with Alzheimer’s disease. Many of the others worked for the Alzheimer’s Association at its regional offices. This was an opportunity to get my message to 500 more people and whomever else they would pass it on to. I passed out as many copies of my article as I could during the breaks. As I handed it to them, I told people it was a case study about my husband with early onset Alzheimer’s disease.
Steve hobbled along with his aching toe, and I could tell he was hurting more as the day went on. We took every opportunity to reduce walking, but Steve didn’t complain and encouraged me to keep plugging away because all of this was so important and he “would live.” The pain and swelling gradually subsided over the next twenty-four hours despite the walking.
We repeated this same process on Tuesday, March 24 (our thirty-seventh anniversary!), in the office of Senator Edward Kennedy, providing his aide, Craig Martinez, with a copy of additional information of the ability of ketones to shrink the type of tumors the Senator had. The meeting was rushed and had to be even more concise than usual to cover the most important details. Martinez seemed mostly unimpressed, but he took notice when I talked about traumatic brain injury and the troops.
We rushed from the Senate building to the Omni for the second day of the conference, arriving in time for the tail end of the research update, followed by a question and answer period. MS of the Public Policy Office had advised me that this would be the time to bring up the MCT oil/ketones. I was holding the microphone, preparing to ask my question, when the moderator, William Thies, Ph.D., the medical and scientific director of the Alzheimer’s Association, decided there were to be no more questions. Coincidence? I was disappointed that I did not get to ask my question publicly, but I did take the opportunity to meet the speaker who gave the research update and ask if she received my information by e-mail the prior week. She did not recall seeing it, so I gave her copies of some of the information.
I then approached Dr. Thies, who seemed to know who I was, to see if he had received the packet of information I sent awhile back and to discuss the issue of why the Alzheimer’s Association was so opposed to letting people know about the possibility that MCT or coconut oil could help. He told me that the idea needed extensive clinical testing before they would be willing to do that. I asked how he thought that could be accomplished, since it was unlikely a pharmaceutical company would undertake this. He suggested I contact the Alzheimer’s Disease Cooperative Study at University of California in San Diego. I thanked him for the information.
Steve and I then proceeded to the ballroom for a luncheon. Ironically, as a result of my discussion with Dr. Thies, the only two seats I could find together were in the center in the second row. I say ironically because, after we settled into our seats, I realized that my chair was back to back with that of Maria Shriver, who was a speaker for this event and would also be testifying in Congress the following day. We would learn that her father, Sargent Shriver, ninety-three at the time, no longer knew who she was and no longer remembered what the Peace Corps was, even though he had worked so very hard to develop this program many years earlier.
I decided there was nothing to lose by approaching her. Packet of information in hand, I told her that I was a physician from Florida, caring for sick and premature newborns, and my fifty-nine-year-old husband, Steve, had the early onset disease. A nice looking man with salt and pepper hair and glasses peered over my shoulder as I presented the information. I asked if she was aware of the concept of “brain starvation” or “diabetes of the brain.” The man replied that this topic was discussed in the upcoming HBO documentary, The Alzheimer Project. I told them about ketones and medium-chain triglycerides. I advised her that her husband might be familiar with MCT oil since bodybuilders use it to increase lean body mass. She listened very intently and circled items on the article I gave her.
Shortly thereafter, Maria Shriver gave her presentation about her father, and the man who peered over my shoulder was introduced as the producer of The Alzheimer Project. An eight-minute segment of the documentary was presented. As soon as there was an opportunity, I gave the producer a packet of information as well.
The afternoon session was all about strategy for the meetings we were to have as advocates on Capitol Hill the following day. A young lady presented the three points we were to make in these meetings on behalf of the Alzheimer’s Association. Specifically, to reduce the two-year wait for Medicare to go into effect for those under age sixty-five who qualify for disability, to increase funding for Alzheimer’s disease by $250 million over several years, and to create an Alzheimer’s Center to study the disease and find the cure.
At that point, they wanted us to discuss these strategies with our neighbor to prepare us for the following day with legislators. I decided this would be a good time to distribute more of my articles. I simply told people, “This is a case study about my husband,” and asked if they had received a copy yet. After distributing about forty to fifty of them, a young man walked up to the mike and announced there was someone distributing information about coconut oil and this was distracting people from the real message they were to take to Capitol Hill. MS of the Public Policy Office, who was seated on the stage, announced that they wanted everyone in the room to know that this was not from the Alzheimer’s Association, they did not support it, and this was not to be taken to Capitol Hill. In retrospect, perhaps it was not the best time to distribute this information. However, it would be my last opportunity to get this information to a group of people who needed it. Of the 500 people attending, perhaps half had gotten a copy of the article. After that session, a few people came up to me, told me they had read it, and that they appreciated receiving the information.
We then broke down into groups by state to go over the meetings that were scheduled for the following day. MS went group to group to answer questions. When he arrived in our area of the room and finished his spiel, I told him that I would like to speak with him for a few minutes. Steve came with me, and we retreated to the hallway. I advised him that it was never my intention to have people take this as “the message” to Capitol Hill. My only intention was to get this information to 500 more people caring for loved ones with Alzheimer’s. He told me that he thought it was irresponsible to push this kind of information based on one case. I told him that I had heard from many others whose loved ones have also improved and that all he needed to do was to look at the message boards for the Alzheimer’s Association to see many accounts of this. In addition, Steve’s case was just further confirmation of the studies performed by Accera. He reminded me that Dr. Thies had directed me earlier that day to the group in San Diego. I advised MS that, by the time someone applies for a grant and completes extensive clinical trials, years could pass and everyone in the room with Alzheimer’s and the loved ones of the others would have seriously deteriorated or died. Shouldn’t they at least have the opportunity to know about this and decide for themselves if they would like to try this dietary intervention?
On Wednesday at 9 A.M., we attended a meet-and-greet with Senator Bill Nelson and left shortly after he did to speak with Melissa Bruce on behalf of Senator Daniel Inouye of Hawaii, then eighty-five years old. People over age eighty-five carry a 50 percent risk of Alzheimer’s. Senator Inouye was chairman of the Senate Appropriations Committee and on the Health Subcommittee. In addition to the usual discussion, I pointed out that coconut is the starting point of ketones, and the economy of Hawaii could benefit from use of coconut oil, medium-chain triglycerides, and production of the ketone ester. Bruce seemed to get it and assured us that she would pass this information on to the senator.
We then walked posthaste to the Dirksen Building to attend the annual hearing of the Special Committee on Aging. We listened intently to testimony by Justice Sandra Day O’Connor, former House Speaker Newt Gingrich, Maria Shriver, and others. They encouraged the Senate committee to embrace the concept of the Alzheimer’s Project Center, pointing out the Genome Project had been so successful. Gingrich testified that, with such a center, a means of prevention for Alzheimer’s disease could be discovered by the year 2020. I could not help but think that prevention could be possible within the next year, along with stabilization and treatment of the disease a few years later, if the ketone ester was funded. I decided that I would take the suggestion of the young lady in Senator Kohl’s office to submit written testimony. The members of the Special Committee on Aging at least would then be exposed to this information when reviewing the transcript of their hearing. We watched the press conference afterward and then beat a path to the offices of the U.S. Representatives on the other side of Capitol Hill.
We had a meeting with Anna Heaton in the office of our friend, U.S. Representative Ginny Brown-Waite, along with Peggy M, another advocate from our district who worked in the local Alzheimer’s Association office. We wore our purple sashes and spouted out the information we were to convey. After lunch with Peggy, we met again with Anna and also with Justin, who was involved in appropriations, on the subject of ketones. Justin was already familiar with the topic, and the Representative herself came into the office to say hello and assure us that she was working on this issue. I advised her that we were able to get a meeting in the office of her mentor, Representative C. William “Bill” Young, shortly thereafter.
When we arrived at Representative Young’s office, we were advised that he had been called away to an emergency meeting, and we would be meeting with his chief of staff, Harry Glenn. While waiting, we noticed a photo of Michael J. Fox shaking hands with the Representative. We had the pleasure of meeting with Glenn, who spent considerable time with us and listened with great interest. I emphasized the potential of ketones as a treatment for Parkinson’s and added that I’d tried to get this information to Michael J. Fox through his foundation without apparent success. Glenn handed me contact information for a group in Sarasota, Florida, that studies traumatic brain injury. He also gave me some homework. He advised us that Fox had been a good friend of Representative Young’s for many years and urged me to write a letter to him and send a package of information, stressing Parkinson’s disease. Glenn offered to personally see that this was delivered directly to Fox. I told him that I would most definitely follow through on what he suggested.
We later joined Dr. Veech and a colleague from his lab at the hotel. We discussed the various meetings over the past few days, and we were all very pleased with the course of events. Dr. Veech encouraged me to write this book—the sooner the better. After a leisurely breakfast the following morning we returned to Spring Hill and reality.
STEVE ON THE ALZHEIMER’S ASSOCIATION AND CONFERENCE:
“[The conference] was a big show; that’s all it was…. It was like when I worked for the mental health centers; they were always getting money from the government, but nothing was getting done, year after year. There is so little you can do, and they make a big party out of it. It’s about people, and people hurting, and the hurting just doesn’t ever stop. They keep fighting over and over for the money, and nothing changes…. And then there was the brouhaha about you [Mary] and your article … but I am glad you put the stuff out there. You had the cure in your hand and they ignored you.”