THE CANAVAN GRANT

FREQUENTLY ASKED QUESTIONS ABOUT NECPAD AND THE CANAVAN GRANT

 What is NECPAD?

 

The New England Connection for PKU and Allied Disorders, Inc. (NECPAD) is a 501 c 3 nonprofit organization which is committed to fulfill its working mission to inspire learning, social support, research and public policy to help develop the full potential of people affected by PKU and Allied Disorders.  We are proud to support those living with PKU, their families and professionals throughout New England.  Our Board of Directors comes from across New England and is comprised of patients, parents and clinicians who all volunteer their time and energy to support NECPAD’s mission.

 

What is the Canavan Grant and how can it help Massachusetts PKU patients and their families?

 

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 2019 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 19. 2018 and will expire as of June 30, 2018.  NECPAD may only consider requests for reimbursement or new purchases for expenses incurred between those dates.  The budget allots funds for the support of PKU patients and their families in terms of the following categories.    

 

  1. Assistance for new families and/or those in need

    1. Low Protein Food Lists

    2. Gram Scales

    3. Transportation to clinic or family meetings

    4. Low Protein Food Samples

    5. PKU.com subscriptions

    6. Parking vouchers

    7. Deductibles/co-pays

    8. Small appliances

  2. PKU School/Cooking Demonstrations

  3. Low Protein Food (not otherwise covered by insurance)

  4. Medically Prescribed Formula (not otherwise covered by insurance)

  5. Face Forward program

  6. PKU Camp and the YMCA on Cape Cod

  7. Family Support Events – NECPAD

  8. Scholarships

  9. Other expenses in administering the grant (e.g. postage)

 

Does NECPAD have any plans to expend part of the Canavan Grant to help educate families and bring them together to support each other?

 

 We will organize Family Fun Events in 2019 and perhaps another Conference in Fall 2019.  More information to follow.

 

How will the Canavan Grant be expended this Fiscal Year?

 

We now have our work cut out for us to ensure we fully expend the Canavan Grant to directly benefit Massachusetts PKU patients and their families.  NECPAD is proud to be able to administer the Canavan Grant this year.  Because of the June 30, 2019 deadline for the Canavan Grant, NECPAD needs to move quickly to ensure the funds are fully expended.   NECPAD has sent out applications via the metabolic clinics, the PKU listserv and by e-mail in an effort to invite all MA PKU patients and their families to apply for assistance.  

 

How do I apply for Canavan Grant funds?

 

Please see the attached application for how you can apply for the Canavan Grant.  Again, please note that the Canavan Grant is only for PKU patients and their families residing in Massachusetts for expenses incurred between October 19, 2019 and June 30, 2019 (NOTE: The Canavan Grant can include the SSYMCA Camp and Face Forward program as long as PKU patients are registered and paid for on or before June 30, 2018. NECPAD can pay tuitions directly as long as individuals are registered, or NECPAD can reimburse patients AS LONG AS THE TUITIONS ARE PAID FOR ON OR BEFORE JUNE 30, 2019.)

 

Please read the application carefully, follow the directions, complete it in its entirety, and return the application and any receipts or supporting documentation to the following address:

 

NECPAD – Canavan Grant

c/o Tanya Parrazzo

27 Murray Circle

Raynham, MA 02767

 

APPLICATION DEADLINE IS APRIL 1, 2019.

Late applications, up until June 30, 2019, will be accepted.

    PLEASE NOTE: All applications will be reviewed and

        processed on a “first come, first served” basis.

 

Will I automatically receive assistance from the Canavan Grant if I apply?
 

NECPAD will do its best to accommodate every request for assistance as possible given the budget that has been approved by DPH, but we cannot guarantee that all requests will be granted.  NECPAD will work closely with the metabolic clinics to reach out to all Massachusetts PKU patients and their families and to determine need.   

 

How do I learn more about the Canavan Grant?

 

If you have any questions when completing the application or about the Canavan Grant in general, please e-mail necpad.org@gmail.com or call Denise Queally at 781-706-9219.

   

Who currently serves on NECPAD and how can I become more involved?

 

NECPAD is a volunteer, nonprofit organization.  It welcomes future Board Members to fulfill its working mission to inspire learning, social support, research and public policy to help develop the full potential of people affected by PKU and Allied Disorders.  WE NEED YOU!

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