Connecting with Karen

Building Networks for Impact

It occurred to me as I was flying home one Friday night from the World Orphan Drug Congress (WODC) that those of us who support the SWF financially or otherwise are truly forward thinkers and tenacious! The donations invested in the SWF create a ripple effect for maximum impact.

The families and patient’s living with a Sturge-Weber diagnosis and their healthcare providers have an advocate on the frontlines with biotech companies which have the potential to improve the quality of life and care for those diagnosed. The clinical and research investigators have an advocate that queries companies poised to develop therapies or trials (which unbeknownst to the companies could also benefit those of us diagnosed with SWS and birthmarks) or to interest young researchers in our cause. I am personally touched to get to meet so many key opinion leaders and to see some amazing moments like the one in this photo. I tend to fire on all cylinders once great connections have happened that will strengthen our network of support or foster new clinical/scientific research! The plane ride home gives me the opportunity to prioritize the leads and connections as well as to decompress.

The WODC is an international congress meeting that brings together key stakeholders engaged in rare diseases. The National Institutes of Health, the Food and Drug Association, biotech companies, clinical trial companies, marketing and communication companies, registry companies, angel investors, and many more! This is an important venue for the SWF to participate in because the short term and long term impact for you and the SWF will resonate long after the congress! This meeting is an example of an event that is made possible by your donations and has it’s own ripple effect. As your advocate, the SWF works one on one with you to get the resources and care you need then we go directly to the source and share your story and that of the SWF. This one on one access at the WODC generates leads for corporate sponsorship, facilitated new research collaborations amongst investigators, and it gains access to materials which will improve your learning and life. We are able to build personal relationships planting seeds of partnership for the short term and long term benefit of SWS patients and those with Port Wine Birthmarks.

There are several not for profits now serving the SWS and Port Wine Birthmark population. Of course, I’m biased but I truly believe that your SWF donation is invested for short term and long term maximum impact and it ensures a financially solid and diverse organization. Your donation provides tailored referrals, advocacy in many sectors as well as government agencies and it builds inroads to critical clinical trials. Most importantly, it gives you access to many online and personal meetings where you can develop relationships for a lifetime! The ripple continues as these clinical trials improve care and discovery and it brings increased learning and empowerment to the next family in need. The impact of bringing all these stakeholders together at our International Conference and more local conferences through scholarships, lectures and personal stories keeps the momentum going! Thank you for joining with the SWF as we foster that ripple effect into a TIDAL WAVE of good news!