We are not a cause.
We are a community.

The biggest misconception is that life is hard. And it’s not. That we’re sad. And we’re not.

Leigh, Greyson's Mom

Now What?

For parents and children living with spina bifida, there's always a "now what?” that comes next. No matter if you just heard the words, or have known the diagnosis for years. Every next step is a step into the unknown. But with the right community of people by your side, those steps don't have to be taken alone.

Learning Opportunities

  • IEPs & Special Education

    Your child may be eligible for special education services in school. The Individuals with Disabilities Act (IDEA), entitles children with disabilities to "a free appropriate public education.” This is often called FAPE, or special education.

    Although each state and school is different, one of the most important parts of the special education process is creating a written plan for your child's education. This is called an Individualized Education Program, or the IEP.

    Developing the IEP consist of two important parts:

    1. IEP meetings, where you, your child and school staff members together decide on an education program for your child
    2. the IEP document, which lists annual goals and short-term objectives along with the services and support your child will receive

  • Additional information on IEPs & IDEA:

  • Special Needs Trust

    If your child is receiving certain government benefits and receives an inheritance on the death of his or her parents, receipt of that inheritance may disqualify the child from receiving such benefits.

    A Special Needs Trust allows to you provide equally for all of your children, while preserving important government benefits for the child with special needs.

    Each trust must be specifically designed to suit the needs and situation of each family. A properly drafted trust:

    • allows you to leave assets to your child with Spina Bifida
    • provides for proper management of those assets during the child's lifetime
    • prevents the child's inheritance from interfering with his or her government benefits

  • Who to Contact

    An estate planning attorney could provide further information regarding Special Needs Trusts and whether such a trust is appropriate for you and your family.

Scholarship Opportunities

Roll with us.

Every year we host a family friendly event held to raise awareness about Spina Bifida and celebrate those living with it.
Learn more about the Stroll 'N Roll.

We're here. We care

There are plenty of reasons to join our community. We hold events. We offer financial assistance. We provide resources and scholarships. But, if you ask any one of our members, they'll tell you the same: the biggest benefit is the relationships they've established with each other.

Meet the board

Our Board of Directors focuses on ways to help those living with Spina Bifida in West Michigan. We meet throughout the year to plan events like our Annual Stroll N' Roll, foster community, and advocate for awareness in the West Michigan Region.

  • Nick Phillips President
  • Jodie Anderson Vice President
  • Leigh Gibbs Treasurer
  • Emily Bush Secretary
  • Jamie Freitag Board member
  • Kelly Goff Board member
  • Shannan Kooistra Board member
  • Carol Carpenter Board member

Partners

  • Mary Free Bed Foundation

  • Helen DeVos Children's Hospital

  • Family Hope Foundation

  • University of Michigan

Letter from the Board

Our parents are down to earth and friendly. Each member is full of personality and contributes to the dynamic of the group. We rely on each other for advice and encouragement, knowing that every parent has a "now what" in front of them that another member has already been through.

As a member, you have access to a wide variety of events, resources, and scholarships.

We would love to share our lives with you too!

At first, I worried about what Grayden would take away from our lives. I never could have imagined how much he would add.

Kelly, Grayden's Mom

Get Involved

No matter who you are, whether your life has been affected by spina bifida or not, you have a valuable place in our community. Here are a few ways you can get involved.

Upcoming Events

We provide many great programs & events every year for our local spina bifida community. Below is a list of the things we have scheduled for 2013. Watch our Facebook page for further details about exact times & dates. If you would like further details about any of the events listed, please contact us!

OUR PROGRAMS & EVENT

January 31, 2015
Jr. Pacer's Grand Rapids Drive Halftime Show
7pm at The Delta Plex

February 9, 2015
GR Griffins vs. Sled Wings
5-7:30pm at Griff's Ice House

February 28-March 1, 2015
Jr. Pacers Home Tournament
North Rockford Middle School

March 7-8, 2015
Sled Wings Home Tournament
Patterson Ice Arena

March 21, 2015
Family Fun Night at the 3 Mile Project 2-5pm
3050 Walkent Dr. NW Grand Rapids, MI 49544

October 3, 2015
5th Annual Stroll 'N Roll
Frederik Meijer Gardens 1000 East Beltline Ave Grand Rapids, MI 49525

December 5, 2015
Holiday Party
Look for an invite coming sometime in November with the details!

Volunteer opportunities

Whether you're interested in hosting a support group, passing out brochures or helping with the annual Stroll N Roll, we would love to have your help! Contact us using the email wmisbo@gmail.com we will find a place for you!

Say Hello

You can reach us through the e-mail address wmisbo@gmail.com.

We welcome your communication with our organization. We are always looking for new resources, programs & events that will enhance the lives of the West Michigan Spina Bifida community.