November 2013


by George Taniwaki

Once you and your kidney matchmaker have mailed letters to all of your friends, relatives, and others on your mailing list, consider broadcasting your message to an expanding circle to include coworkers, church members, neighbors, and others in your social network who you don’t know as well. One or more of them may be willing to begin the donor evaluation process. But until you tell them, they are unlikely to know of your need for a kidney donor. And if they don’t know, they won’t get tested.

One of the best way to reach these folks is a flyer (Fig 1) posted on a message board where they can see it.

FlyerSandra

Figure 1. Example of a half-page flyer. Courtesy of Sandra Driscoll

Design a flyer

A flyer can be almost any size from business card (2” x 3-1/2”) to poster (24” x 36” or more). For convenience, I recommend making it 8-1/2” x 11” (or A4 size in Europe) with vertical (portrait) orientation. A good flyer is like an advertisement. It must catch a person’s attention and make them want to stop and read it. Like an advertisement it should have the contain the following elements:

  1. Headline
  2. Photograph or illustration
  3. Message to potential donors
  4. Your contact information
  5. Logo (optional)
  6. QR code (optional)
  7. Tear-off tabs (optional)
  8. Calling card holder (optional)

Tips for creating a flyer are available at the Living Kidney Donor Search (LKDS) website

Items 1 through 5 (Headline to Logo)

Advice for creating a headline, photograph or illustration, message to potential donors, your contact information, and logo are provided in a separate Nov 2013 blog post.

The advice in that blog post was specifically targeted toward the design of a calling card, which is generally much smaller than a flyer. Just because a flyer has more space available doesn’t mean you need to fill it all with text. Having abundant white space makes the flyer attractive and can guide the eye to the important information. Use the extra space to make the headline bigger, make the picture bigger, and add more white space around your message to potential donors. Resist the temptation to add more text and make your story more detailed. Instead keep it the same as your calling card. Or, if you do add more text, do it to make your story more persuasive in order to drive people to your website or take other action.

Add a QR code to your flyer

A QR code is a 2-dimensional bar code (Fig 2). Anyone who owns a smartphone with a built-in camera and a bar code reading app can scan the bar code and be directed to a website with more information.

If you have a personal website or Facebook page with information about your need for a kidney donor, you should add a QR code to your flyer. You can do this by going to http://delivr.com/. This free service will create a bar code for you. Further, every time someone scans your bar code, it will track it and provide you with statistics about the users.

For instance, I created an account on delivr.com. I created a new campaign and entered the address for my patient guide, https://realnumeracy.wordpress.com/kidney-patient-guide/. The delivr.com service creates a custom link for me delivr.com/2tpt6 and generates the QR code that I can include anywhere (Fig 2).

FlyerQRcode

Figure 2. QR code that directs readers to delivr.com/2tpt6 and redirects to realnumeracy.wordpress.com/kidney-patient-guide

An example of a flyer with a QR code is shown below (Fig 3). One suggestion to improve this flyer. I would include the web address in the flyer. That way, people without a smartphone can still visit the website by writing down the address and visiting it once they get home.

FlyerTarra

Figure 3. Example of a flyer with QR code. Image from Shining Strong for Tarra

Add tear-off tabs to your flyer

To engage people who don’t have a smartphone, you can add tear-off tabs to the bottom of your flyer. The tear-off tab should include your phone number and website address (Fig 4). A little trick to make people more likely to tear off one of the tabs is to tear the first one off yourself before posting the flyer.

Also remember to include all the contact information in the body of the flyer so that people can copy it down in case all the tabs are taken.

FlyerEric

Figure 4. Example of a flyer with tear-off tabs. Image from KidneyQuest.com

Add a calling card holder to your flyer

Even better than tear-off tabs is folding the bottom of the flyer to create a pocket to hold your calling cards (Fig 5). Encourage people to take one. Again, remember to include all the contact information in the body of the flyer so that people can copy it down in case all the calling cards are taken.

FlyerCallingCardHolder

Figure 5. Example of a flyer with calling card holder

Printing and distributing your flyers

The least expensive way to print your flyers is to use a home inkjet printer. If you don’t have one, you may be able to have your matchmaker or another friend print them for you. Otherwise, you can have them printed at a local print shop. For great tips on choosing paper and printing flyers check out the LKDS website.

Places that often have a bulletin board where you can post your flyer include:

  1. The print shop where you bought your flyer
  2. Grocery stores
  3. Your workplace or union hall and those of all your friends and family members
  4. Local shopping malls/strip malls
  5. Churches

Remember to get permission from the owner of the bulletin board before posting your flyer.

To make it easy for your friends and family to print their own flyers, make sure a copy of it is posted on your website.

For more ideas on finding a donor, see my Kidney patient guide.

by George Taniwaki

This week’s issue of the New Engl J Med (subscription required) should be of special interest for those who follow kidney disease. The issue contains several articles on medical investigations into treatments and risk factors for  kidney disease along with related editorials. Unfortunately, most of the news is not good.

NewEnglJMed

However, there is an important lesson to gain from these studies. Scientific knowledge advances in two ways. First, is the knowledge gained by learning what works. There is the obvious clinical benefit of knowing what is the best treatment for a patient. But successful studies also point the direction for other researchers showing where they can expect the greatest promise for future investigation.

Yet failures are valuable learning experiences. Knowing what doesn’t work reduces the chance that doctors or patients will try the same therapy on their own. But an unsuccessful trial does not mean a line of research should be abandoned. Rather, a failure should teach us to look at root causes.

Every experiment or medical trial is expected to be successful (otherwise you should invest time and effort in a different project with a greater potential payoff). When it isn’t we are temporarily surprised. But that should lead to a new investigation as to why the trial did not work as intended. And that investigation will hopefully lead to new insights that can be added to the body of human knowledge.

Trial of ACE inhibitors and ARBs

In the first article, Linda Fried of the Univ. Pittsburgh School of Medicine and her coauthors examine the effect of angiotensin-converting–enzyme (ACE) inhibitors and angiotensin-receptor blockers (ARBs) on patients with type 2 diabetes who also have kidney disease. These two drugs are often prescribed for the treatment of hypertension and congestive heart failure.

For kidney patients, the use of these drugs was intended to slow the decline in glomerular filtration rate (GFR). Previous studies had shown that ACE inhibitors and ARBs could benefit patients who already showed signs of proteinuria (protein in the urine, a sign of kidney disease). The goal of this study was to see if prescribing ACE inhibitors and ARBs to kidney patients earlier could forestall the progress toward end-stage renal disease (ESRD).

Since the progress of kidney disease for a particular patient is uncertain and can take many years, this study required a large sample that would be willing to participate by taking a prescription drug (or a placebo) for a multiyear period.

As reported in the article, the trial was stopped after four years because of safety concerns. There were more adverse events  in the therapy group than in the placebo group. The most common problem was acute kidney injury with the next most common being hyperkalemia (high potassium levels in the blood that if untreated can cause irregular heart beat). Because the study was stopped early, we now know that the combination therapy of ACE inhibitors and ARBs can cause injury, but we don’t know if it can delay the onset of ESRD.

Trial of bardoxolone methyl

The next article (online first) by Dick de Zeeuw of the Univ. Groningen and coauthors summarizes the results of treating patients that have both type 2 diabetes and stage 4 kidney disease with bardoxolone methyl. This drug is an antioxidant that can taken orally and has been shown to reduce serum creatinine.

Similar to the ACE inhibitor and ARB study, the sample size was large and the test was intended to span several years. However, also like the other study, it was ended early due to safety concerns. Those in the therapy group had more adverse events than those in the placebo group. Those who received the treatment had significantly higher GFR (a good thing) but experienced higher rates of heart failure, nonfatal stroke, hospitalization for heart failure, and higher death rate from cardiovascular causes.

Off-label use of abatacept

Abatacept (sold under the trade name Orencia) is a protein that inhibits a molecule called B7-1 that activates T cells. It is approved for the treatment of rheumatoid arthritis. It is also in clinical trials for the treatment of multiple sclerosis, type 1 diabetes, and lupus. These are all autoimmune diseases.

Chih-Chuan Yu of Harvard Medical School and coauthors noted elevated levels of B7-1 in certain patients with proteinuric kidney disease,  including primary focal segmental glomerulosclerosis (FSGS). They conducted a series of in vitro studies (laboratory experiments) to show that abatacept would block the migration of podocytes (a type of kidney cell). They then recruited patients whose FSGS who did not respond to standard treatments. They selected four kidney transplant patients with rituximab-resistant recurrent FSGS and one patient with glucocorticoid-resistant primary FSGS. They treated all five with abatacept and all five patients experienced remission.

APOL1 risk variants

APOL1 is the gene that encodes the apolipoprotein L1, a component of HDL, also called good cholesterol. Although the exact purpose of APOL1 is not known, we do know that certain variants of APOL1, called G1 and G2, circulating in plasma can suppress Trypanosoma brucei, the parasite that causes sleeping sickness. We also know that these variants are associated with ESRD, though the mechanism isn’t known.

We know that the G1 and G2 variants are more common among African-Americans than in white/Caucasians. And we know that African-Americans have between 3 to 5 times the risk of ESRD than white/Caucasians even though the prevalence of earlier stages of kidney disease are roughly equal for both racial groups. Thus, the question is whether these variants of APOL1 are responsible for some of the difference between rates of ESRD among blacks and whites.

A paper by Afshin Parsa, et al., attempts to answer that question by looking at data from two studies, one called the African-American Study of Kidney Disease and Hypertension (AASK) and the other called Chronic Renal Insufficiency Cohort (CRIC). They find direct evidence that “APOL1 high-risk variants are associated with increased disease progression over the long-term.”

Data for the AASK patient group are shown in the table below. Some items to notice:

  1. There is very little difference in CKD incidence between the patients with no copies of the APOL1 risk variants and those with one copy. This indicates that the trait is recessive
  2. Even patients with no copies of the risk variants have high rates of CKD. This indicates there are more factors left to be discovered
  3. There is a high prevalence (23%) of patients with 2 copies of the risk variants within the African-American population
  4. The risk variants may explain only about 5% (= 23% * (58% – 35%)) of the difference in the incidence rate of ESRD between blacks and whites. Further, the association does not explain the cause of kidney disease in patients with two copies of the risk variants. It does however seems to rule out hypertension and diabetes, since the study controlled for these factors
All patients
Col %
CKD at end*
Col %

Row %
No copies of APOL1 risk variants 234   34%   83   29% 35%
1 copy of APOL1 risk variants 299   43% 112   39% 37%
2 copies of APOL1 risk variants 160   23%   93   35% 58%
TOTAL 693 100% 288 100% 42%

*Number with ESRD or doubling of serum creatinine by end of study

Conclusions

All four papers described above were the subject of editorials in this week’s issue of New Engl J Med. One written by Dr. Zeeuw, the lead author of the  bardoxolone methyl paper, points out that the failure of ACE inhibitor ARB therapies may indicate that “improvement in surrogate markers — lower blood pressure or less albuminuria — does not translate into risk reduction.” In fact he writes that it may go further and the use of these two measures as risk markers for “as therapeutic targets in our patients with type 2 diabetes” may be in doubt. He also promotes the use of “enrichment design” to select patients who are less likely to display an adverse event.

Another editorial by Jonathan Himmelfarb and Katherine Tuttle of the Univ. Washington School of Medicine (and the Kidney Research Institute) make three recommendations to improve the safety and likelihood of success for clinical trials. First, all researchers should make more preclinical data available so that others can conduct better preclinical analysis. Second, researchers should consider the possible off-target effects of a proposed agent and collect data before starting clinical trials. The development of organ on a chip may greatly help this. Finally, researchers should exercise caution whenever a drug has known side effects, for instance when a “drug for diabetic kidney disease increases, rather than decreases, the degree of albuminuria.”

In a third editorial, Börje Haraldsson of the Univ. Gothenburg says the work of Dr. Yu and his colleagues “may signal the start of a new era in the treatment of patients with proteinuric kidney disease.” Let us hope that is true. As we discover more about how the immune system works, how it interacts with its cellular and microbial environment, and how it can be modulated, treatment of many chronic conditions, cancer, and even old age may be affected.

by George Taniwaki

Check out this proposal I recently saw on Elance, a popular job board that matches consultants like me with small businesses that are looking for help. The spelling, grammar, punctuation, and line breaks are all copied directly from the website.

Bussiness Ideas for a startup

Sales & Marketing > Research & Surveys

ElancePostProfile

I need someone to come up with some business ideas for a start-up business.
However the ideas MUST be validated to show that it is profitable.
you must prove to me somehow that atleast 3 people are willing to pay money for this idea.
the proof should be strong and show that people are genuinely willing to take the effort to pay for the idea and are not just participating in wishful thinking.
you can do this validation any way you like, there are plenty of creative ways you can do it. and you don’t have to take anyone’s money.
a quick and rough example is pretending you have a product in limited numbers.
ask people if they like the product. if they do ask them to pay for it.
when they are trying to pay for it tell them you have run out.
and then show me the proof
now this is a just a quick and rough example but you get my idea.

Desired Skills

Business Analysis, Direct Marketing, Internet Marketing, Market Research, Craigslist

****

Well, geez, if I had a great idea that I knew I could sell, why would I want to work for you?

Below is one of the proposals this post received as a response:

ElanceResponseProfile

I have led over 300 clients to “leap over” their competition and become the # 1 dominant most successful business for their niche in their market….

Skills

GREATLY INCREASING SUCCESS FOR MY CLIENTS

****

All I can say is that these two entrepreneurs are simply made for each other.

by George Taniwaki

If you are a kidney patient seeking a living donor, you need to start what Harvey Mysel of the Living Kidney Donors Network (LKDN) calls a Kidney Kampaign. A search for a donor is all about numbers. You want as many people as possible to know about your need for a kidney transplant. Whenever you meet someone, tell them about your condition and your story. Then, at the end of any conversation, remember to give them calling cards printed with pertinent information (Fig 1).

Giving people your calling card serves two purposes. First, it will remind them later of who you are and how to contact the transplant center. Second, even if the people who you give the card to do not personally decide to get tested, they may remember your story and speak to 3, 4, or maybe even 20 other people about their meeting with you. One of these people may step up and get tested. This is how social networking can help you reach a vast audience and can help you find a living donor.

HarveyCardFrontHarveyCardBack

Figure 1. Example of a kidney kampaign calling card. This is the card used by Harvey Mysel, the founder of Living Kidney Donors Network when he discovered he needed a transplant in 2012

Give away your calling cards

You and your matchmaker (topic of a future blog post) should give away your calling cards freely. Hand them out to all your friends, family, and acquaintances, even to strangers. And don’t just give them one card. Offer several and ask the recipients to help spread your story and to give away the cards to others.

Calling cards are useful beyond face-to-face encounters. When you and your matchmaker send cards and letters (see Nov 2011 blog post), remember to include several calling cards in the envelope.

When you post a notice on a message board (topic of a future blog post), remember to include a pocket to hold a stack of calling cards.

When you and your matchmaker host an event (topic of a future blog post), remember to hand out calling cards to all the participants.

Design a calling card

A calling card is different from a business card. A business card just presents the facts, your name, company, and contact information. A Kidney Kampaign calling card provides contact information, but it must also provide a compelling story to get the person receiving it to take some action.

There are three very good sets of instructions on creating a calling cards to find a kidney donor. The first is by the Living Kidney Donors Network. The other two resources are provided by Living Kidney Donor Search and the Living Kidney Donor Search tools and tips. You should read the excellent advice given on all three websites.

A basic business card is 2” x 3-1/2”, printed one-side, horizontal (landscape) orientation, in black and white (Fig 2). But to make your card stand out, consider the following options:

  1. Vertical (portrait) orientation
  2. Four-color printing, especially good for photographs
  3. Printed two-sides, also called duplex printing, almost required to fit all the information needed
  4. Reverse type, that is, white lettering on a dark background (should be limited to large bold text, like the headline)
  5. Picture or graphic that runs off the edge of the card, also called a bleed
  6. Folded card, shaped like a tent, helpful if you have a longer story to tell and will also make you card stand out from other cards

CallingCard

Figure 2. Examples of the options described above

A kidney donor calling card is quite different from a business card. A business card is passive and just provides basic information for the recipient of the card to contact you. Your calling card is more like an advertisement. Like an advertisement, it should contain the following five items:

  1. Headline
  2. Photograph or illustration
  3. Message to potential donors
  4. Your contact information
  5. Logo (optional)

Each of these items is described in detail below. When designing your business card, start with pencil and paper and rough out the design before going to the computer to create the final design that will be printed.

Headline

The first two things a person will see on your calling card are the headline and the photograph. If you don’t have a photograph on your card, then you will definitely need a headline. The headline should be direct and no more than one sentence long. Some ideas are:

  1. Help me fight chronic kidney disease
  2. Help me find a kidney donor
  3. Become a living kidney donor
  4. You can give the gift of life
  5. Save a life, start with a simple test

Photograph or illustration

A large photograph or illustration is optional, but it is highly recommended that you include one. A picture will draw the attention of any person who looks at your calling card for the first time. To be effective at creating a positive connection, the photograph must be of high quality. Don’t skimp. Don’t try to take the picture yourself. Ask your matchmaker or a camera-savvy friend for help.

To make the best first impression, the picture should be of high technical quality. You often cannot fix a bad picture using a photo editing tool like Photoshop. Instead, start with a good shot. This means the picture should be:

  1. In focus (to avoid fuzzy image)
  2. Taken with a tripod or steady hand (to avoid shaky or blurred image)
  3. Well lit (to avoid grainy background or red-eye)
  4. Taken in daylight (to avoid blue fluorescent cast or orange tungsten cast)
  5. Taken with the background chosen with care and cropped to eliminate extraneous items in the background

Some recommended subjects that will make the photograph compelling are listed below.

  1. A close up of you smiling (a natural smile, not a forced one)
  2. You with other members of your family who cannot be donors (you will need to explain why they cannot be donors in the text of the calling card)
  3. You with pets
  4. You with props that show you participating in a favorite hobby or family activity

Message to potential donors

Your message to potential donors should include an appeal that explains why you want them to donate. It should also include instructions on how to get started as a donor. The message has to be short. You can only fit about 100 words on the front and back of a standard business card.

An oversized card can have more words, but I actually recommend having fewer words on the card and instead include a link to your website for people who want more details. Some ideas on what to include are:

  1. A short biography and explanation of why you need a kidney transplant
  2. How your family is affected by your condition
  3. Medical benefits to you of living donor transplant (compared to lifestyle when undergoing dialysis therapy)
  4. Who can donate, must be between XX to XX in age (ask transplant center for its range), no uncontrolled hypertension, diabetes, or kidney disease, overall good health
  5. How to learn more about the costs and risks of becoming a living donor (link to website for details)
  6. Call for volunteers to get a simple blood test to start the process
  7. Contact info for the living donor transplant coordinator, or the independent living donor advocate, depending on the process at your transplant hospital
  8. Encourage them to spread the word about your need to others

with you the latest Be sure to inform the transplant coordinator and independent living donor advocate of your plans to publicize your donor search.

An example of a biography is shown below:

Hello, my name is John Smith. I have kidney disease and I’m in need of a kidney transplant. The wait for a deceased donor kidney can be more than 5 years. To avoid this wait, I am actively pursuing a living kidney transplant. A kidney from a living donor lasts about twice as long as one from a deceased donor.

Kidney donors need to be healthy, no high blood pressure or diabetic. A blood test will determine whether additional tests will be done to see if you are a suitable donor. To schedule a test contact Janet Jones, my transplant coordinator at the New York Transplant Hospital: jjones@nyth.com or 212-456-7890.

To learn more about the living donation process you can contact me (jsmith@gmail.com or 212-123-4567), visit the LKDN website (www.lkdn.org), or contact my transplant coordinator.

Your contact information

The following information should be included on the front of your calling card:

  1. Name
  2. Phone number (optional, but recommended)
  3. Email address
  4. Web address of your donor search website or Facebook page

Logo

If you are promoting organ donation in general. you may want to include the Donate Life America logo. Similarly, if you are promoting the Living Kidney Donors Network program, you may want to include the LKDN logo.

Where to buy calling cards

There are hundreds of choices for getting your calling cards printed. Any small print shop should be capable of showing you paper, ink, and other options for a professional looking card. If you prefer buying on the web, LKDN has created a portfolio of calling cards on the FedEx Office website (formerly Kinko’s).  To use the portfolio and purchase cards from FedEx Office:

  1. In a web browser, navigate to http://www.fedex.com/us/office/designprint/index.html
  2. Click My Account (on left)
  3. Type E-mail = info@LKDN.org and Password = businesscard and click Sign In
  4. Click View My Portfolio (in Design Center box)

A box of 250 business cards in color, printed two-sided will cost about $50 plus tax and shipping. If you need help, call FedEx Office customer service 1-888-889-7121.

If you want to design your cards from scratch and save money too, Living Kidney Donor Search (LKDS) recommends using Zazzle. The site guides you through the design steps. A pack of 100 cards printed 2-sided will cost about $25. To save even more, LKDS says discount codes for Zazzle are often available on RetailMeNot.

Another popular source for business cards is CafePress. They have a large number of designs available. However, they don’t support 2-sided printing or custom color printing.

More examples

Three more examples of kidney donor search calling cards are shown below.

CallingCardMandyFrontCallingCardMandyBack

Figure 3. Kidney Kampaign calling card for Amando Melgar, III. From LKDN portfolio on FedEx Office website

CallingCardTentFoldCallingCardTentFold2

Figure 4 and 5. Examples of covers for tent fold cards based on a t-shirt design sold by Zazzle (left) and a poster sold by CafePress (right). Designs are copyrighted

Thanks to Harvey Mysel of Living Kidney Donors Network for providing me with example cards that I use in my patient counseling. Additional thanks to Suzanne Kloss of Living Kidney Donor Search for providing additional tips on designing and using calling cards.

For more ideas on finding a donor, see my Kidney patient guide.