Massachusetts
Spotlight Project:
New England Connection for PKU and Allied Disorders
The New England Connection for PKU and Allied Disorders (NECPAD) is a non-profit organization that benefits and supports individuals with Phenylketonuria (PKU) and other related disorders and their families. From its beginning in the early ‘90s as an informal support group for a handful of parents, it has grown into an established 501(C)(3) organization that is poised to fulfill its mission: “To provide support and services to all individuals and families with PKU and allied disorders, and to encourage research and increase public awareness of the conditions”.
NECPAD has a long history of organizing family weekends, conferences, and events for children, but this year it has undertaken a significant new project, which also happens to be its largest project for 2009. This involves spending the $75,000 granted to NECPAD by a Fiscal Year 2009 State of Massachusetts line item secured by Representative Christine Canavan. These funds have been earmarked this fiscal year to support PKU patients and their families within Massachusetts. The funds are disbursed through the Massachusetts Department of Public Health (DPH) and must be spent by June 30, 2009.
NECPAD is currently finalizing the application process to allow patients and their families to apply for these funds. NECPAD will work closely with Massachusetts metabolic clinics to identify patients and distribute needed supplies such as scales and cookbooks. Among other things, NECPAD will also use the funds to support those patients who have no or inadequate insurance coverage for low protein food and specially made formula.
It will be a busy year and NECPAD will no doubt grow as an organization on many levels as they carry out this task. The NEGC is pleased to be associated with this group already, as it was an Innovative Project award recipient in our 2007-2008 and 2008-2009 funding cycles. Click here to read more!
Please learn more by visiting NECPAD’s website at: www.necpad.org.
5/09