Welcome
to PWSA
of Minnesota!

The Prader-Willi Syndrome Association of Minnesota, Inc. (PWSA-MN) is a state chapter of PWSA (USA), the national association dedicated to Prader-Willi syndrome in the United States. PWSA-MN represents people with Prader-Willi Syndrome, their families, friends, and care givers in the state of Minnesota.

Our goal is to offer information and support to one another and to foster public awareness of this syndrome.

For more information on Prader-Willi Syndrome visit the national website www.pwsausa.org

Upcoming Events

2013 PWSA of MN Fall Meeting: Sept. 7, 2013

United Heart & Vascular Clinic
Nasseff Specialty Center (on the United Hospital campus – see map)
225 Smith Ave. N., St. Paul, MN
Room: Auditorium
Parking: The recommended parking ramp is the Gold Ramp (see map)
Map

10:00 A.M.-Noon

Speaker: Jennifer Miller, M.D.

Jennifer Miller is a pediatric endocrinologist at the University of Florida. Her research focus includes: investigating the effects of growth hormone treatment on brain development, sleep, and appetite in individuals with PWS; investigating the effects of early-onset weight gain on brain development; and studying the sleep abnormalities in individuals with PWS.

Registration:

To help us plan enough seating for anticipated attendance, we ask that you register for this event by emailing Kristi Rickenbach at kristi_cole@yahoo.com or calling her at 763-242-9074.

PLEASE NOTE: Childcare will not be available during the meeting.

PAST EVENTS

2013 PWSA of MN Annual Meeting: May 18, 2013

Laurel Terrace Apartments—Activity Room
250 Turners Crossroad South
Golden Valley, MN 55416
Google Map

1:00-3:00 P.M.

Agenda:

  • Election of officers and board members
  • Speaker: Carol Hearn (lawyer and mom of a child with PWS) will discuss “Planning for Transition Planning” for both younger and older children.
  • Sharing Session: Come prepared to share your insights about food and behavioral strategies, dietary supplements and getting our kids moving!

Additional Notes:

  • No childcare available. We’ll have some toys available for young kids to play with while parents attend the meeting, but feel free to bring additional toys for the children to share.
  • A low calorie snack (probably marshmallow treats) and beverages will be available.
  • We'll have someone stationed at the building’s front door to let people in, but if no one is there, call Carol Hearn on her cell at 612-868-3842.

Golf Tournament: May 10, 2013

Oak Glen Golf Course
599 McKusick Rd.
Stillwater, MN 55082
Google Map

11:00 a.m. shotgun start (Registration 9-11:00 a.m. Awards dinner & prizes approx. 5 p.m.)

For more detailed information on the event, visit www.mnmovehelper.com!

PWSA Bowling Party: January 27, 2013

Elsie's Bowling Center
729 Marshall St. N.E.
Minneapolis, MN
612-378-9701
Google Map

1:30-4:00 P.M.

Prizes, treats, shoes, and unlimited bowling!

Please RSVP to Judie and Neal Shapiro at 763-546-4926.

Board and Officers

If you have any questions about the website, our events, or our organization, please don't hesitate to contact us!

Officers

Board Members at Large

  • Elane Buechner
  • Lynn Garrick
  • Carol Hearn
  • Kymm Salwasser
  • Denise Servais
  • Neal Shapiro

Resources

Here are a few local and national resources to help you find more detailed information about the syndrome, research and symptom management, and the many services that are available to help individuals with PWS and their families.

LINKS

Prader-Willi Syndrome Association (USA)

PWSA (USA) is PWSA MN's parent organization. They are an excellent source for detailed information on the syndrome, as well as nationwide services such as crisis counceling and assistance navigating the special education system. www.pwsausa.org

PACER Center

The PACER Center is an advocacy organization that works on behalf of all children with disabilities. They provide a wide range of information and assistance to help parents and children navigate the services and programs that are available to them. www.pacer.org

DOWNLOADS

Parent Journal (Sample)

This is an example of a Parent Journaltemplate that could be used in connection with preparing documents for a guardianship proceeding. You can download this document and use it as a guide when you are preparing for your own guardianship proceeding.

Quick Medical Facts Re [Your Child]

This is a form for keeping track of your child's medical information (doctors' contact info, medications, etc.), so you can easily convey it to temporary caregivers. You can download this document and fill it out with your own child's information.