Board of Directors
A Message from Curt Stanton, SWF Board Chair
July 15, 2020
The Board of Directors meeting on July 7, 2020 was held via teleconference with all Directors in attendance. The Board approved the FY2020-21annual budget of $572,600. This budget reflects a modest increase in light of current economic conditions. I am thankful for each of you who have shared your donations with the Foundation to support vital programs and critical research grants. It is a very exciting time in our organization’s history as we anticipate new clinical trials and further research with zebrafish and a SWS mouse model.
The SWF Clinical Care Network (CCN) is expanding to even more states enabling you to have access closer to home with healthcare providers dedicated to treating patients with SWS, KT and Birthmarks. As you will see in the upcoming Roots to A Cure research supplement, many of the CCN sites are participating in the Brain Vascular Malformation Network (BVMC) which will revolutionize the pairing of clinical data and technology to create a comprehensive patient profile and natural history. The SWF International Research Network (SWFIRN) investigators have utilized the seed grant funding provided by your donations to garner more robust funding from the National Institutes of Health (NIH). Dr. Nathan Lawson and Dr. Joyce Bischoff are now collaborating with the NIH grant after first meeting at the last SWFIRN meeting in Delaware!
The Board looks forward to seeing you again in brighter and healthier times as the staff plans the next International Conference in Texas in the summer of 2021. Be well and I welcome your feedback and input on the SWF and the vital programs we deliver.
This fiscal year, the SWF will adopt a donor acknowledgement program (similar to a church) which will provide donor tax receipt letters at the end of the year. This will make it easier for you to file taxes and optimizes every dollar the foundation receives. We will also be sending periodic handwritten notes throughout the year to our donors, because we want you to know how very special you are to us.
Linda Larach Cohen, NY, NY
Stan M Fisher, Bigfork, MT
Roy Geronemus, MD, New York City, NY
Joseph G. Morelli, MD, Denver, CO
Gerard E. Puorro, Wayland, MA
William L. Weston, MD, Denver, CO
Melanie Wood, Bellaire, TX
Pam McIntyre, North Reading, MA
Founder and CEO
VP of Operations and Corporate Partnerships
973-895-4445 or 281-788-5915
Jeffrey Loeb, M.D.
Chief Scientific Strategist
Jonathan Pevsner, Ph.D.
Chief Scientific Officer
Director of Marketing and Programs
SWF Office Manager
Community Relations Director
Social Media Specialist
Main Office Contact Information
General email address: firstname.lastname@example.org
Physical and Mailing Address: 12345 Jones Road, Suite 125, Houston, TX 77070
The SWF office is open Monday - Friday from 8:00am -4:00pm, CST, Monday - Friday.