I WANT TO participate

Chiari, Syringomyelia & Ehlers-Danlos Syndromes (EDS) Walks

unite@home – UNLOCKING ANSWERS while sheltering in place

In light of the COVID19 restrictions in most U.S. states to shelter in place, we can still use your help! Register here to UNITE@HOME – Stay safe at home and help us keep our research and education programs going in


  1. REGISTER HERE: https://give.classy.org/uniteathome
  2. SHARE with friends and family
  3. Raise $35 and RECEIVE your bandana in the mail*

Every $35 raised you will receive a purple Bobby Jones CSF branded bandana. Create your own protective mask at home! 

*Limit of 4 per campaign



unite@night Chiari walk is a collection of one-mile, casual evening walks around the country that bring together people who are living with the devastating effects of Chiari malformation, syringomyelia, and related disorders. These walks help support local Chapters, large-scale research and education efforts and ongoing awareness projects that benefit the families in the United States and abroad who suffer every single day from these disorders.

Help us unlock the answers to these disorders. Each step you take, no matter how difficult, brings hope to patients and their loved ones. Be the key to unlocking real solutions.

If you would like to get involved or if you have any questions/concerns about unite@night Chiari walk, send an email to cpoznik@bobbyjonescsf.org or call the unite@night office at (330) 998-6195.


Find more information about corporate sponsorship HERE. Interested in sponsoring? Contact Cathy Poznik at: cpoznik@bobbyjonescsf.org or (330) 998-6195.


Not a big family or corporation, but want to sponsor a local Chiari, syringomyelia and EDS walk in your area? Sponsorship markers can be purchased at either $50 or $100 per sponsorship! Complete and return this form.

How to set up your own Chiari, syringomyelia, EDS or related disorder walk

The steps to setting up your very own unite@night Chiari walk are simple and Bobby Jones CSF is with you throughout the planning process to help you make decisions about your walk-day activities!

  1. Consult the unite@night Chiari, syringomyelia and EDS Walk Guide to give you ideas and get you started.
  2. Once you feel inspired, complete the 2020 Walk Agreement to secure your walk spot.
  3. Having computer issues? Contact us and we’ll help you fill out the Walk Agreement and set up your own group or solo walk so you can unlock answers for families affected by Chiari malformation, syringomyelia and related disorders.
  4. You’ll receive your very own Walk in a Box list within a few weeks. In the meantime, you can get started fundraising and planning your awareness activities!
  5. If you are unable to plan a group unite@night Chiari walk, you can have your own unite@night Solo Walk! Invite your family, friends and neighbors to join you or head out on your own and take a brief stroll around your neighborhood on any evening.

Interested in setting up a walk? Contact: cpoznik@bobbyjonescsf.org.

Sponsorship Marker Form
Walk in a Box Supply List
Registration Instructions
Bobby Jones CSF W-9
IRS Letter of Determination
Bobby Jones CSF Brochure
Chiari Malformation (CM) Information Page
Ehlers-Danlos Syndrome (EDS) Information Page
Syringomyelia (SM) Information Page
National Sponsorship Tiers
Sample Walk Flyer
Sample Sponsorship Marker
**Coloring pages and Puzzle pages**

When you raise money for the Bobby Jones CSF unite@night Chiari walks, you are raising important funding for education and awareness programs, as well as groundbreaking research in the fields of Chiari malformation, syringomyelia and all related disorders. As if that wasn’t enough of a reason to set up your own Chiari walk, you have the chance to win amazing prizes, too!

2020 Recognition Prize List

*These prizes are available to ALL unite@night walkers. If you participate in a Solo Walk, you are equally as eligible to win any of the above prizes as a group walker!

You may be unable to plan a group unite@night walk. It happens. Maybe it’s too much of a time commitment, you don’t have enough community support yet, or maybe you just aren’t ready. But what if you really want to help raise money for the cause? Well… you can!

You can have your own unite@night Solo Walk! Invite your family, friends and neighbors to join you or head out on your own and take a brief stroll around your neighborhood on any evening. You will still be able to raise money and walk “with us” by taking place in a virtual unite@night walk.

The best part is: you are entitled to win the same recognition prizes as anyone participating in a group Chiari, syringomyelia and EDS walk! Contact us at cpoznik@bobbyjonescsf.org or contact Cathy by phone at (330) 998-6195 to learn more about how to get involved!


What makes a Solo Walk different than any other unite@night walk?

Not much! Solo Walks are almost identical to regular walks, with the exception of the planning stages. You won’t need to secure a venue or go through the motions of finding donated items, etc. The fundraising is all the same.

How do I raise money for my Solo Walk?

You can call on friends, family, neighbors, co-workers (whomever!) for small donations to support your cause. For example, you can try the “pay it forward” technique. Recruit 10 people to donate $25 to your walk and ask them to recruit 10 people to do the same, you have just raised $2,500 for your walk, with practically no work!

How are donations collected?

You will be able to use the Classy fundraising website, just as anyone participating in a group walk would. You may ask people to donate online and credit you directly, or they are able to send in a check or money order made payable to “Bobby CSF” to the address below. You are discouraged from sending cash in the mail: it’s just not safe! If you have collected your donations in cash (since most people do donate this way), you can convert that money to a cashier’s check and mail it in! For assistance on how to do so, pay a visit to your bank and talk to the local teller.

Make checks payable to “Bobby CSF” and send to:
Bobby Jones CSF
Attn: Andrea Grosz
69-39 Yellowstone Blvd. #216
Forest Hills, NY 11375