Vice President, Board of Directors
The Board of Directors of the Phelan-McDermid Syndrome Foundation at its annual meeting Jan. 9-10 developed plans to increase efforts to support the families of those affected by PMS.
Directors identified areas where the Foundation can expand the help it offers to families, both newly diagnosed and those who have been living with the diagnosis for years.
Some of the changes will be recognizable immediately, such as changing the name of the Membership Committee to Family Support Committee. The impact of other decisions will take longer to realize, such as our new efforts at lobbying for legislation and funding in Washington.
Among the family-oriented initiatives:
-- Using regional representatives to compile local resource information and expanding their contacts with families in their areas.
-- Expanding the information collected by the international patient registry to build a better picture of PMS for researchers.
-- Continuing to develop clinical care guidelines.
-- Approving limited funding for regional gatherings.
-- Revamping www.pmsf.org to better serve our many stakeholders.
-- Expanding social networking to stay more closely in touch with families.
-- Reaching out internationally through our Global Partners Program, including attending in May a second meeting in London.
-- Launching legislative advocacy on the local and federal levels such as engaging families in awareness of Rare Disease Day in February.
The Board, meeting at the Foundation office in Venice, Fla., also reviewed budget priorities for 2015 and will approve the spending plan soon after making some changes. Looking back to 2014, the Directors would like to thank everyone who donated their time and money to allow the Foundation to fulfill its goals.
Among those larger donors were Pepsi employees, Annie's Golf Classic, Logan's Heroes, the Giving Challenge, the Year End appeal, our "$22 for 22q" campaign and contributions from 1,243 individuals.
"We are happy with the direction the Foundation is taking in this new year," said Susan Lomas, Board President. "We have so many exciting things planned that will benefit our families in so many ways. We thank everyone who has helped us in the past and urge your continued support in the future."
As always, we value your input. If you have questions or suggestions, please contact Board President Susan Lomas at
or Executive Director Barbara Cruz at