Who We Are
NECPAD is a non-profit organization that benefits and supports individuals with Phenylketonuria (PKU) and other related disorders and their families. We hope you will find the information you are looking for. Please join our mailing list to stay up-to-date on activities, information and research. Contact us with any questions or suggestions.
Ways We Help
New England Connection for PKU and Allied Disorders, Inc. is here to provide support and services to all individuals and families with PKU and allied disorders. As well as to encourage research and increase public awareness of the conditions. The work we do at our Non-Profit Organization is aimed at enhancing and empowering individuals and families lives in our community.
The Canavan Grant
Thanks to the vision, hard work and dedication of Representative Christine Canavan (now retired), proud grandmother of an almost 9 year old boy with PKU, and the support of the NECPAD community, the MA Legislature has again supported a Massachusetts Fiscal Year appropriation in the amount of $50,000 – this is the sixth such appropriation since 2009! In honor of Representative Canavan, NECPAD has respectfully renamed this funding the “Canavan Grant”! The Canavan Grant will support the costs associated with a budget that NECPAD has proposed to the MA Department of Public Health (DPH) that oversees the allocation of these funds. NECPAD is responsible for disbursing these funds in accordance with this budget. PLEASE NOTE: The Canavan Grant began on October 19th and will expire as of June 30th. NECPAD may only consider requests for reimbursement or new purchases for expenses incurred between those dates.
In 2005, NECPAD was awarded a generous grant from the Lyndon Paul Lorusso Charitable Memorial Fund of The Cape Cod Foundation (the Lorusso Fund). The Lorusso Fund is a vital philanthropic legacy of Paul and Lila Lorusso in the name of their late son, Lyndon Paul Lorusso, who died tragically in 1971. Just 17 at the time of his death, the Lorusso's only child has been the inspiration for a host of charitable efforts benefiting countless people. NECPAD is honored to be one of the organizations that has been entrusted with these funds to help sustain NECPAD’s charitable objectives.
By allocating a percentage of all funds raised by NECPAD since and by keeping the principle invested, the NECPAD Board of Directors has caused the fund to grow and will now begin to disburse the interest in the form of academic scholarships. NECPAD is proud to refer to this scholarship program as the Lyndon Paul Lorusso Scholarship.
Support, Help, and Encouragement
There are often questions, concerns, frustrations and fears when dealing with a metabolic disorder. Because the New England Connection’s disorders are rare, support may be difficult to find. Please let us help! We can put you in touch with others who have had similar experiences, so that you can talk or meet one-on-one. Please remember, you are not alone in this condition.
You can speak with:
A medical professional, such as a doctor, nutritionist, psychologist, or social worker
An individual afflicted with the same metabolic condition, within a certain age group (examples: PKU adult, HCU teenager).
A family member living with someone who has a metabolic disorder (examples: parent, guardian, grandparent, brother, sister). For more information on support for parents, see our parent-to-parent program.Canavan Grant Funds
Vincent van Gogh
"Great things are done by a series of small things brought together"