Hello Vincent,

Thank you for your comment. I proposed the concept along with a supportive website and/or partnering up with existing site(s) such as marrow.org which already calls a robust set of educational content and database about existing bone marrow drives. For example, O.S 10.6 already has apps available for computers....so I envision in the future apps/urls will have a common ground and it would be interesting to design for that middle ground. In this case, whatever is more accessible to the vast majority would be best.

Great idea Carola! I wonder whether this should be a native app (which would have to be downloaded, but may then have more staying power on your screen) or a mobile web-based app (which would work on any web-enabled phone without any downloading, perhaps lowering the barrier to use and enabling quicker viral spread).

Thank you Gabby and Eva for your comments. Jim, I was very inspired by how you organized yourselves at the office and wanted to figure out a tool to help groups and individuals reach the information easily and effectively as well as share the information with you contacts with a few clicks.

Carola,
Thanks for the email alerting me to this! What an excellent idea. As you know, I am one of the coworkers who became a donor. But, besides the card in my wallet and the occassional fund-raise letter, I do not feel I am connected to the marrow.org donor program. I'd like to do more. This is a great way for current donors to help spread the word via Facebook and other social media.
Jim

A fantastic idea! There are thousands of apps with no real purpose other than to amuse. Here is something that can use current technology to help spread valuable information and really make a difference. I can't wait to see the finished app and look forward to download. :)

A fantastic idea! There are thousands of apps with no real purpose other than to amuse. Here is something that can use current technology to help spread valuable information and really make a difference. I can't wait to see the finished app and look forward to download. :)

What a great idea! This is an extraordinary way to build consciousness to an unfortunate disease. In addition it gives way for community building and rapport both of which are instrumental in creating awareness.

The kickstarter information is very interesting.

Maja, Thank you so much for your feedback and resource links. The more I think about it the more I imagine all the attributes this solution could include. I look forward to the next step of this project.

this is great.. doable and could make many small changes that lead to a big change which i think is the most realistic and in so effective way of change.

what makes much sense to me is keeping the project meaningful on a personal level then communal, then local, and then regional... it should have more response than taking the top-down approach.

the ideas that pop to my head:

- marketing the app through a beautiful little viral video (your itp thesis documentary comes to mind, your manner of interviewing.. unforgettable personal testimonies)...

- if there is an opportunity, this could physically promoted (as your suitcase installation physically illustrated the theme of your project...) and this could be in the form of a pop up store, pop up drive http://en.wikipedia.org/wiki/Pop-up_retail...

- having an assigned leader for different communities/locations who will be stirring the conversation about the topic and generate discussions and actions...

- the www.kickstarter.com could help to raise funds but also to spread the idea

- i have a friend who just finished his doctorate at university in washington in Human Computer Interaction, Ubiquitous Computing, and Medical Informatics. "in particular, he is interested in ways in which mobile technology can be used to help people manage their health by supporting them in making health-promoting lifestyle changes and providing them with ways to easily capture and retrieve information in their health records. he is also interested in the privacy aspects of mobile and other ubiquitous technologies."... i can connect you with him if you want!

that's what comes to mind at this moment, i'll let you know if i think of something else that's possibly relevant...

best of luck!!!

The increasingly dominant communication technologies in the world are now mobile, be they iPhones, smartphones, or new incarnations of computer technologies such as the iPad. Simplifying the the education gap through the use of these technologies is the best way to conduct outreach in places like the US and other highly technological countries around the world. The idea of an app to accomplish this mission is a logical step toward using the most modern and widely-used resources at hand at this time. These technologies are are still growing and spreading to all corners of the world, they can be the present and the future of these kind of efforts for the social good. This is a great idea, one that can also probably bring in many collaborators, sponsors, and most importantly volunteers, as the vast majority of participants are somehow linked in to the communications revolution.

I am Carola's boyfriend and I am at day 120+ post-transplant for A.L.L., an acute form of leukemia for which there is no guaranteed cure. I have struggled with this illness since 2008, and my first course of treatment were 8 months of high-dose chemotherapy with average 3 week inpatient hospitalizations. I went into complete remission soon enough, but the toll of that much chemotherapy left me weak and sick for many months, to the point where I had to stop my outpatient chemotherapy treatments to control what is known as the Philadelphia Chromosome, a genetic glitch in the leukemia which actually makes prognosis even poorer, with an average long-term survival rate of only 5%. The remission lasted only three months, and a relapse meant only one thing: My only chance at life was a bone marrow transplant. This challenge was compounded by the fact that I am of mixed Chilean, Polish, Spanish and foreign-born. The chances of finding an unrelated donor match were pretty bleak from the start. My two siblings were also not matches for me.

Despite my brother's efforts at finding a match for me among my cousins in Chile, his trip down there to organize their bone marrow testing did not yield any matches for me. Meanwhile, I was receiving inpatient chemotherapy again to hopefully spark a second complete remission, which is a major challenge once you relapse once. A second remission was achieved, but I spent many many months back on my chemotherapy pill that still made me sick and ineligible for any transplant. After many months of being sick everyday due to the side effects of this drug, my doctor finally agreed to move on to another medication - there are only three - and the first two had been extremely toxic to me. The third drug, Tasigna, was handled much better by my system and it gave me time to regain my strength and much of my health. But the specter of a second relapse was not of matter of if, but when, and my oncologist insisted that if I did nothing the leukemia would return, and I most probably not be able to survive that. My friends at work had also mobilized and conducted bone marrow drives, but at most they were able to recruit around 100 people to get swabbed and be put into the bone marrow registry. This is a lot of people to be sure, but in the realm of genetics and bone marrow matching, their willingness to donate marrow was more an act of solidarity than a real possibility of finding a match for me. But someone out there that also needs a bone marrow may match up with someone in my office, and that is the whole point.

So, why am I still here? The option of my participation in an experimental study with a half-matched sibling appeared from both City of Hope in Los Angeles and at the Stanford Cancer Center. Lucky for me my sister, although not a very good match ( a decent match is at minimum and 8 of 10, and an excellent match is a 10 of 10), was at least a half-match (5 of 10), and that qualified us to be in the study. I am still an experiment in progress. I received my transplant in November 2010, and after two and a half months of hospitalization I am now attending their outpatient clinic for further care. Although I am not out of the woods yet, I am still here and my new marrow and my body are ever so slowly adjusting to one another. The most important thing is that my immune system is slowly reconstituting itself. My recovery should be complete at about one year after transplant.

I share my story because my transplant could have happened much sooner than it did had there been a faster and more massive donor movement in place. I would have been stronger and less damaged by so much chemotherapy that I received. Others are not so lucky and simply cannot hold out for a transplant as long as I had to. I believe that with these recent technological leaps we need to take advantage of our resources to the fullest. An app that could exponentially increase education and participation and most importantly, speed up the donor process will save lives and find matched donors sooner for many that are doomed otherwise. Mobile technologies are also expanding all over the world and in a nation of past, present, and future immigrants, the need for integrating more and more people into the donor databases is key. It could all start with a simple app, why not this one. Cheers.

 Jane, thank you for bringing my attention to donnorschoosebm.org, I think matchpoint could partner up with a site like donnorschoosebm.org to present users information on cases and personal stories. Building up with an existing organization such as donors choose makes financing these bone marrow donor drives easier.

Jonathan,

Thank you for sharing your story and your passion for making a difference.
Feel free to expand on my concept and add any ideas you think can improve the usability of what this app could be.

My main goal was to have an easy, accessible, connection to existing marrow drives in your area and information you can share with peers with existing social networks, to add to the peer-to-peer encouragement. The app would also allow you to add and organize a drive sponsored by your company, organization, team, etc. It could work perfectly as an addition to existing sites and corporate sponsorships such as Maries'; idea : http://bit.ly/eVmHHP.

I'm really looking forward to see what collectively we can come up with for this challenge.

I've added my name to your facebook page, hit me for more ideas and design solutions.

Carola

p.s My boyfriend is in his 120+ days post haplo-transplant, I would really like to learn more about your experience off line.

It is an extraordinary and excellent idea. One of the main drawbacks of BMT is that it draws people’s frightening thoughts about the transplant procedure on the donor side, and this, I think will help to keep information handy for people to access it easily.

Hi Carola, I really like this idea. Finding people who want to participate in a blood donor drive is a fundamental missing piece in organizing the drive. Make it easier to organizer a drive and make it easier to find people to organize the drive with you, great! I mentioned in a previous post how Team Sameer and Vinay created a toolkit for organizing drives at the workplace: http://openideo.com/open/how-might-we-increase-the-number-of-bone-marrow-donors-to-help-save-more-lives/concepting/donors-choose.-you-share-journey.-a-match-is-made-seen-and-heard./ (see part on syndication and feedback)
Would Matchpoint also match potential drive volunteers within in similar professions or companies?

This is a fantastic idea. I have actually been thinking about this concept for quite some time myself too. I am in the software development field and also a recipient of a bone marrow transplant in December '09

A brief story if you don't mind - diagnosed with AML in March '09 and there were no full matches in the registry at all. My friends and family organized bone marrow drives across the world registering 5,000+ people, raising $50,000+ for partner organizations (DKMS, Gift of Life, Be The Match, etc), and so far have facilitated 3 transplants. I never found my full match and proceeded with a haplo transplant (half match) from my wonderful sister. I'm 15 months post transplant now. In the last year we have formed an organization, 30K Friends Foundation (www.30kfriends.org), aimed at connecting patients with organizations specializing in cancer services, supporting patients and families organize bone marrow drives, and help them navigate the difficult process of finding their perfect match.

We have been compiling our concepts on how to tackle this important and difficult problem of how to increase the bone marrow registry. The Matchpoint application is something we've been thinking about and I see this concept as a prime enabler of connecting people who can help with people in need. It weaves into our every day lives and the social fabric of who we are and what touch.

Specific to the application, I would like to expand on it a bit. I believe the use of location based services would be a key function. For example, one feature of the app that could help connect people in need with people who can help would go something like this...

Either the patient, their family, or the hospital registers the patient as someone in need on an online service. The type of information disclosed to the service is TBD, but one attribute can be location. Then, as people enter an area/location or "check-in" to a location that is near the location of a patient, the app would inform the user about the person in need. They can be directed on how and where to help, learn about upcoming drives, others in need, etc. Furthermore, if NMDP or other orgs partner with certain locations, for example restaurants, a person who checked-in to the restaurant and learns of a patient in need could walk up to the hostess and get swabbed on the spot. Immediate support for the patient. The person feels good about what they did and spreads the word.

Would love to talk more about this with the group.

Cheers,
Jonathan

Thank you Magda for the clarification

Be The Match has been entrusted by Congress to respond to the public and the need to sustain the marrow donor registry. The reason we need your financial support is to defray the costs associated with adding a new donor to the registry. Costs are in three areas, registration, enrollment and ongoing registry communication/engagement.
Be The Match is a non-profit organization and we do ask for help in funding/fundraising to help to offset the cost of processing the tests and do our life saving work. The cost to enter a person into the registry is about $100.00. We rely on our sponsors and volunteers to help us fundraise. This fundraising does not need to be the entire $100.00 per person. We can work with sponsors to discuss such options as asking donors at the drive if they can make a donation that is tax deductible, and other fundraising ideas.



 

My post below was to address Maia's question as well.

Ashley,
I believe if you sign up for a donor drive as an organization or place of business the cost if free to participants and to the organization because it is done on-site, (no cost of shipping) and because of the amount of people who sing up as donors at one time. My goal is to make the information of these events easily accessible.


Thank you for links to other ideas, I'll check them out.

Carola and Maia, you're so right - the cost of getting a kit and also hosting a drive can be prohibitive for many people. Maybe there's another concept we can create to address these costs? Where might we look to find sponsors for these kinds of drives? OpenIDEATOR Marie had some interesting ideas you might want to check out http://bit.ly/eVaI8m and http://bit.ly/eVmHHP.

Carola, I agree that donor drives are great ways of getting people involved, especially since they don't have to pay to sign up. Your app idea to spread the word/connect people to drives already going on is a good one.

My question was not from the perspective of the potential donor (swabee), but from the point of view of those who put on the events. What is the cost to the sponsors? Do they pay per person that they sign up?

Maybe if it's more cost effective to register people in large numbers, those who want to put on registration drives could also join forces through this app. Putting on an event or helping to put one on could also be a great follow-up engagement for those that used the app to sign up for the registry.

Open Bone Marrow Donor Drives at community events are free of charge to potential donors

Maia,
In our experience, many people were happy and willing to be tested to be a bone marrow donor, specially after learning it only takes a cheek swab. I would send them to marrow.org which is the best source of comprehensive information about becoming a bone marrow donor, but there was a fee for the home kit.

I think directing people to open donor drives in their area where they can invite others to participate as well, makes spreading the word and adding donor easier and faster. User can also organize a donor drive in their place of work or organizations they belong to.

Sorry, Carola! I typed the wrong name and can't undo my comment!

Thanks for sharing your story, Ashley. I'm glad to hear your boyfriend was able to find a match.

I'm surprised at how much it costs to get a home kit. Is cost a significant barrier to sponsoring these registration drives? I'm curious at the difference in cost per person for the home kit vs. a registration drive. Also, many people in this competition have suggested the equivalent of a home kit (available at dentist offices, restaurants, icecream stores, with branding or special shapes (like an ice cream spoon!) etc.). Those ideas seem like a great way to get people to register, but I'm wondering if it would be really expensive. If $56 is the ballpark for the kit and mailing, that type of approach would even be a barrier if it's used as a CSM campaign for a big chain.

Thank you Ashley. I wanted to be practical in presenting a tool I think people who are already thinking about registering could benefit from. With a little peer to peer pressure and an accessible one touch tool, they would become registered donors and use this same technique to insight others as well.

Carola, thanks for sharing your personal story about bone marrow transplants - and what a unique idea! Anything that makes it easier and more fun to people get together and register is a great thing!

I think this is a great idea. I believe that there are many people out there that would love to be donors but they just never get around to do it, or they are just afraid because they don't know much about it. Hence when someone sees people their age, common friends that are doing it, or just learn the cons and pros they might be encourage to donate.