YourCity.MD: A good way to give back

Joe Benza’s story: 

I’m an entrepreneur, with several successful businesses over the years.  My book called "Preventing Aids" published in 1985 by JALSCO, Inc.  is in 40 countries.  I also bought and sold Internet domain names as a rewarding hobby.  I come from a medical family:  I have a brother who’s a surgeon, and we have dentists, dental hygienists and a urologist in the family as well. 

My father had Parkinson’s, and his hand would shake a little.  He was a proud man, so he wanted medication to stop that from happening as he was very self-conscious.  He ended up getting leukemia, which was one of the rare side effects of taking his partiular drug.  My whole family missed it; we didn’t look at the drugs he was taking to see if the risk outweighed the reward; none of us looked.  The drug was somewhat controversial, and my Dad told me two of his doctors argued about the use of the drug.  One of the doctors stated the other doctor was getting a kickback or had a financial interest of some kind in prescribing the drug! 

Experiencing side effects, he was misdiagnosed by his doctors for four months, and then he passed away.  We were really angry but took on most all of the blame ourselves...at least, I know I did.

About a year and a half later, a business opportunity developed.  I’d realized that the name www.YourCity.MD was available as a Web domain name with the "Local" city names as well.  The Gannett company encouraged me to build the websites to help people like my Dad and my family.  They were prepared to collaborate with me on making YourCity.MD into a business. They ultimately bowed out, but I kept with it.  In light of what had happened to my father, it seemed a good way to give back to everyone else so they can avoid our guilt by using our free resources to make the best decisions for their own families.  

Today, we’re helping people in 100% of the USA to find good local doctors and the best healthcare information available.  We are the only "local" platform on the Internet in any industry with a national footprint. 

Read another entrepreneur’s entrepreneurial patient safety story.  Thanks to Joe for the interview, and to Joelle Caputa of CPR Communications for connecting us. 

Including her favorite meals and TV shows: Web-based caregiver communities

When Stephen Dworkin's father was diagnosed with pancreatic cancer in 2005, he and his two siblings began to share in his care. But Stephen was in Newton, his parent lived in Florida, and his brother and sister lived in Connecticut. "My dad passed away relatively quickly. And then we were completely unprepared to care for my mother," Stephen said.

At the time, Stephen's business partner, Jonathan Quint, saw the challenges his wife was having in caring for her mother, and the two knew they'd hit on a much-needed service: helping baby boomers care for aging parents.

They came up with Caregiver Helper, a secure online community resource that houses information about medications being taken, emergency contacts, doctors' appointments, and even the patient's favorite activities.

"Anytime a new caregiver came to my mother's house, all the information was available, including her favorite meals and television shows. And each time there was a new doctor, all of her medications could be printed out."

One in four American families are juggling similar caregiving responsibilities, according to the National Alliance for Caregiving.

Advice to Baby Boomers caring for parents who live far away: Consider a resource like this one.

Thanks to Susan Chaityn Lebovits for the source article in the Feb. 25 issue of the Boston Globe.

Their commitment to stem cell research: San Diego Consortium for Regenerative Medicine

The California stem cell institute Wednesday awarded $271 million in grants to 12 institutes for the construction of buildings to house stem cell research.

Among the funding was a $43 million grant to the San Diego Consortium for Regenerative Medicine for the construction of a building in Torrey Pines where scientists from four major institutes will combine efforts in stem cell research.

In the proposed $115 million building to be built near the Torrey Pines Gliderport, teams of scientists from across San Diego will collaborate in efforts to unlock the regenerative mysteries of stem cells and how they can be used to address critical health issues.

The San Diego consortium, and the 11 other grant recipients, have committed to invest a total of $560 million from charitable donations and their internal reserves to construct the facilities, bringing the total statewide investment in new research space to $831 million.

"As a patient advocate, I am inspired by the amount of leverage California research institutions have contributed from their charitable donors and from their reserves," said Robert Klein, chairman of the state stem cell institute.

"Their incredible commitment underscores the promise that stem cell research holds for patients suffering from chronic disease and injury," Robert said. His son is such a patient, motivating Robert to become a champion of such research.

The San Diego consortium, which includes University of California San Diego, the Burnham Institute for Medical Research, the Scripps Research Institute and the Salk Institute, plan to build a four-story building, with a basement, full of research equipment, on a 7½ -acre parcel at North Torrey Pines Road and Torrey Pines Scenic Drive. The land, owned by UCSD, is valued at about $15 million and is within walking distance of all four member campuses.

Scientists from all four member institutions will work there, combining expertise on stem cells as well as bioengineering, computational biology, chemistry and clinical sciences. The idea is that by sharing their resources and different expertise, the four institutes will be better equipped to bring new therapies, diagnostics and research tools to market more quickly and efficiently.

The structure the scientists envision would meet federal requirements for a green building and would contain 23,740 square feet of laboratory and support space. Labs would be built without walls separating them. There would also be a cafeteria, as well as an auditorium, to be named for the philanthropic donor, whose name has not yet been announced.

The center will be a highly visible symbol of the region's commitment to stem cell research, and a place where the taxpayers footing the bill can see what progress their money has fueled, said Dr. Edward Holmes, the consortium's president and formerly head of UCSD's medical school.

The San Diego consortium expects it needs to raise at least $72 million to complete funding for the center. And it expects to spend $40 million in faculty recruitment and other costs, bringing the total for the new San Diego Center for Regenerative Medicine to $155 million.

Investment in research infrastructure to extend California's state-of-the-art research capacity is a critical part of the strategic plan established by the California Institute for Regenerative Medicine. The institute was created under Proposition 71, a $3 billion bond initiative approved by state voters in November 2004, to fund stem cell research. The initiative makes California the leader globally in funds dedicated to stem cell research.

Because of the ability of stem cells to evolve into the more than 200 types of cells in the body, the field is believed to hold the promise of curing diseases such as diabetes, Parkinson's and Alzheimer's.

All the institutions receiving these major facilities grants have agreed to expedited construction schedules that will deliver nearly 800,000 square feet of facilities with researchers in the labs within two years.

"This will go a long way toward medical research that could save lives and improve them for people with chronic diseases," Gov. Arnold Schwarzenegger said in a statement Wednesday.

Advice: Fight your disease by channeling your energy like Robert Klein.

Read another story about Robert Klein’s work.

Thanks to Terri Somers for the source story in yesterday's issue of San Diego Online.

I was supposed to live, at best, 3 years: a myeloma foundation

She had graduated from Harvard Business School, and was on the fast track for a leadership position at Searle, the pharmaceutical giant. For four years, Kathy Giusti oversaw the marketing of Searle’s arthritis drugs. In 1995, at age 37, she was married, and had an 18-month old baby girl. In December that year, seeing her doctor for help in getting pregnant again, she learned she had myeloma, a cancer of plasma cells found in bone marrow.

She met with seven myeloma specialists and received contradictory advice. She ultimately chose the most conservative approach, partly because she greatly wanted another baby, and didn't want toxic drugs to interfere with her conception and pregnancy. "I put a plan together, and I went through the whole I.V.F. program to get pregnant."

By 1997, she had quit her job at Searle, and had given birth to a healthy boy.

The previous summer, she had attended a patient seminar sponsored by the International Myeloma Foundation. The foundation's directors asked her to be on their board. She agreed, and wrote a business plan for them. "But I was challenging them about where they were heading and what they are doing with research and funding research. [They were] getting annoyed with me. So they booted me off the board."

In October 1997, she and her sister held a dinner for wealthy friends near her new home in Connecticut, to raise money for myeloma research. It must have been quite delicious; they raised $450,000. She distributed most of it to research, and used the rest to set up the Multiple Myeloma Research Foundation.

She realized that in order to accelerate the development of new myeloma drugs, she needed to foster greater collaboration between researchers and different academic institutions. In 2002, she decided to assemble a consortium of scientists who would be required to submit their research proposals to a steering committee for approval, and to publish their results jointly. In exchange, the scientists would receive access to a tissue bank of myeloma blood cells and bone marrow, as well as administrative and organizational support for lab tests and clinical trials.

Since 1998, the foundation has raised $92 million. Since 2001, 21 drugs derived in part from research funded by the foundation have entered clinical trials, and eight are now in Phase 2 – a track record that pharmaceutical companies would envy.

Dr. Ken Anderson, Kathy's doctor, says, "Myeloma is now a paradigm for new drug development, because of partnerships that occur between academics, large pharmaceutical companies, small biotech, the FDA, the National Cancer Institute, and foundations. And, frankly, Giusti's foundation has been a catalyst that created the urgency and awareness to make this progress possible."

Kathy had a bone marrow transplant in 2006, and her cancer is in remission.

Advice to people struggling with grave diseases: Take heart from Kathy's example, and help as much as you can.

Browse for related stories in the index at the very bottom of this page, or read a story about a similar visionary nonprofit health entrepreneur hero.

Thanks to Dr. Jerome Groopman for the source article in the Jan. 28 issue of the New Yorker.

It’s just middle-aged white guys making them, not the customer: Compression sleeves for lymphedema

Rachel Troxell, 37, learned she had breast cancer three years ago. After going through surgery, chemotherapy and radiation, she said the hardest part was learning that she had lymphedema, a condition that affects a sizable number of breast cancer survivors and cause their limbs to swell with fluid. "With the cancer, there was a clear path to follow, and I knew there was an end to it," she said. "With lymphedema, you are stuck with it, and it affects the quality of your life."

Her treatment for lymphedema required her to wear a compression sleeve constantly, leading to questions from everyone she encountered. Rachel, a videographer and graphic designer, said she became consumed with finding an alternative to the drab, unsightly and uncomfortable sleeve.

"I called some companies that made the ugly garment, asking if there were other options, and they all said no," she said. "It is just middle-aged white guys making them, and they aren’t the customer."

She connected with Kristin Dudley, who was then a 22-year=old fashion student at Drexel University in Philadelphia. They designed a more fashionable and comfortable compression sleeve. Kristin was excited about it because her own grandmother, who had lymphedema, had refused to wear her own compression sleeves.

Rachel and Kristin won third place for the idea in a business plan contest sponsored by Drexel University. They are now partners in Lymphedivas, since starting the company last year.

Their business owes its inspiration to the brush with breast cancer.

Survival rates have increased markedly, so there are now 2.3 million breast cancer survivors in the U.S., according to the Susan G. Komen for the Cure, one of the largest breast cancer research and advocacy organizations. Many survivors are committed to doing something to ease the ordeal of others or to solve a particular problem they encountered in their own treatment.

Advice to those with a serious health condition: Perhaps, like Rachel, you can find innovative ways to help others who suffer from the same health condition you do.

Read another of our entrepreneur stories, or read Marci Alboher's source story in today’s New York Times.