Part II of the Genetic Alliance Interactive Guide

Promoting Research on a Disease

Encouraging research on a particular condition is not impossible - given the right ingredients. However, unlike a deli counter, you can't take a number and wait until the researchers get to you - you've got to do the work!

We collaborated with extramural researchers - researchers who receive money from NIH to conduct research - and at that level were able to influence what research was done on PXE. We didn't just call up a lab and say, "Shove everything else to the side and do PXE!" We started by reading the literature - particularly by searching the NIH's PubMed and CRISP a database of biomedical research funding.

Then we contacted scientists doing any research even remotely related to PXE. All of them were very receptive toward meeting with us. We went and spoke to them and said, "How can we help?" In some instances we asked if we could fund a post-doctoral fellow in their lab for a small amount of money or if they could add a project on if we supported it in any other way.

Our collaborations grew until they now include more than 19 labs around the world and several companies - including a major collaboration with Transgenomic. One of the labs got an NIH grant for PXE research, and our small seed money paid off big time!

We have also always felt that helping other groups and disease achieve their goals would be beneficial for the system, thus our heavy involvement in the Genetic Alliance, the Coalition of Heritable Disorders of Connective Tissue, and the Coalition of Skin Diseases. In the end we will all benefit; staking out our territory and earmarking would not have given us all we have now. And it isn't that we are satisfied, no, we are always hungry for more - our kids are still suffering the effects of the condition - so we have to fight hard - but we chose to fight alongside all of you, moving the front line together.

Patrick Terry
PXE International

Sometimes it isn't money at all that is needed. Sometimes just access to affected individuals, their data and their samples is all that is needed. Lay advocacy groups can build resources that are very power, very useful and provide the highest protections for affected individuals and their families.

» Funding Research by Others

Privacy Policy - Disclaimer - Funding
Maintained by the Genetic Alliance.
The Interactive Guide to Advocacy Groups was written by Sharon Fontaine Terry and Caitlin Burke, with contributions from Genetic Alliance members. The Interactive Guide to Building Advocacy Groups is made available under a Creative Commons license. You may make and share copies of this work for noncommercial purposes without modifications and with this acknowledgement included in full. More information is available at About the Interactive Guide to Building Advocacy Groups.

Send feedback about the Interactive Guide.

SEPTEMBER 2004: This is a preliminary installation of the Interactive Guide to Advocacy Groups. We need your feedback. Make comments on specific pages (you may see error messages, but comments should still post), or send email. Is something missing? Can we make it easier to navigate? This Guide will change regularly over the next few months as we incorporate changes and fine tune the site. Thank you!

AN INTERACTIVE GUIDE TO BUILDING ADVOCACY GROUPS
Part II
Part I Part II Assessment Structure Resources Support Education Research Advocacy Part III	Promoting Research on a Disease Encouraging research on a particular condition is not impossible - given the right ingredients. However, unlike a deli counter, you can't take a number and wait until the researchers get to you - you've got to do the work! We collaborated with extramural researchers - researchers who receive money from NIH to conduct research - and at that level were able to influence what research was done on PXE. We didn't just call up a lab and say, "Shove everything else to the side and do PXE!" We started by reading the literature - particularly by searching the NIH's PubMed and CRISP a database of biomedical research funding. Then we contacted scientists doing any research even remotely related to PXE. All of them were very receptive toward meeting with us. We went and spoke to them and said, "How can we help?" In some instances we asked if we could fund a post-doctoral fellow in their lab for a small amount of money or if they could add a project on if we supported it in any other way. Our collaborations grew until they now include more than 19 labs around the world and several companies - including a major collaboration with Transgenomic. One of the labs got an NIH grant for PXE research, and our small seed money paid off big time! We have also always felt that helping other groups and disease achieve their goals would be beneficial for the system, thus our heavy involvement in the Genetic Alliance, the Coalition of Heritable Disorders of Connective Tissue, and the Coalition of Skin Diseases. In the end we will all benefit; staking out our territory and earmarking would not have given us all we have now. And it isn't that we are satisfied, no, we are always hungry for more - our kids are still suffering the effects of the condition - so we have to fight hard - but we chose to fight alongside all of you, moving the front line together. Patrick Terry PXE International Sometimes it isn't money at all that is needed. Sometimes just access to affected individuals, their data and their samples is all that is needed. Lay advocacy groups can build resources that are very power, very useful and provide the highest protections for affected individuals and their families. » Funding Research by Others Privacy Policy - Disclaimer - Funding Maintained by the Genetic Alliance. The Interactive Guide to Advocacy Groups was written by Sharon Fontaine Terry and Caitlin Burke, with contributions from Genetic Alliance members. The Interactive Guide to Building Advocacy Groups is made available under a Creative Commons license. You may make and share copies of this work for noncommercial purposes without modifications and with this acknowledgement included in full. More information is available at About the Interactive Guide to Building Advocacy Groups. Send feedback about the Interactive Guide. SEPTEMBER 2004: This is a preliminary installation of the Interactive Guide to Advocacy Groups. We need your feedback. Make comments on specific pages (you may see error messages, but comments should still post), or send email. Is something missing? Can we make it easier to navigate? This Guide will change regularly over the next few months as we incorporate changes and fine tune the site. Thank you!	« Genetic Privacy » Funding Research by Others