Chiari & Syringomyelia Foundation, Inc.

Table of Contents! Welcome and Introduction

3-4

Setting Up Your Walk

5-10

Running Your Walk

11-12

Solo Walks

13

Fundraising Module: Friends Asking Friends

14

Fundraising Ideas

15

Walk Committees / Jobs

16-17

Thank You

18

Checklist

19

Printable Sponsorship Form

20

Walk Application/Agreement

21-23

Welcome!! Congratulations! Forming a team and participating in a unite@night walk is a great way to give back and advocate for those who are suffering with Chiari malformation, syringomyelia and related disorders including, but not limited to: Ehlers-Danlos syndrome, hydrocephalus, dysautonomia, postural orthostatic tachycardia syndrome, idiopathic intracranial hypertension, and so on. Regardless of the size of your team, you’ll feel good knowing that you, your friends, family and neighbors all came together to make a huge difference in the fight against these disorders. CSF is planning some extremely involved research projects– and we want to fund even more research projects that we are not exclusively a part of! There will always be new research projects going on, that can range anywhere from new genetic studies to novel therapeutic options that will assist individuals living with these conditions– but we need YOUR help to get these projects off the ground. By hosting a unite@night walk, you are singlehandedly ensuring that the lives of children and adults with Chiari malformation, syringomyelia and related disorders will improve in the future! These walks can be kept very simple, but if you’d like, you can think much bigger and plan an unforgettable day! You can find many ideas and starting points in this guide. Go as big or as small as you wish– these walks are for YOU, as well as the estimated one million families in the United States, alone who are struggling with the effects of Chiari, syringomyelia and related disorders. By hosting a walk—large, or small – you will be doing your part to spread the desperately needed awareness of these conditions. So welcome aboard! We look forward to working with you! **Remember that many of our walkers, family members, and walk Chairs may have physical limits as to what they can do. So we ask that when you can, try to keep it simple— for your own sanity’s sake, and for the sake of your walkers!

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The Chiari & Syringomyelia Foundation’s unite@night is a one-mile, casual evening walk in various locations around the country during the month of June. Each walk will bring people together with the single purpose of directing focus towards the devastating effects of Chiari malformation (CM), syringomyelia (SM) and related disorders (i.e. – Ehlers-Danlos syndrome, hydrocephalus, idiopathic intracranial hypertension, dysautonomia, and many more). unite@night will support the work of the Chiari & Syringomyelia Foundation (CSF) and all of its local Chapters to provide education and awareness, while funding critically needed research projects to potentially find answers for everyone struggling with these conditions.

The Chiari & Syringomyelia Foundation is a 501(c)(3) nonprofit organization. Our Mission: To advance knowledge through research and to educate the medical, allied sciences, and lay community about Chiari malformation, syringomyelia, and related disorders. For additional information and/or questions, regarding the unite@night walks, please contact by email, phone or mail: General unite@night questions/comments: Cathy Poznik, CSF Chapter Coordinator: Kaitlyn Esposito, CSF Program Assistant: Walk Assistant

[email protected] [email protected] [email protected] [email protected]

Cathy Poznik Phone: (330) 998-6195 Mailing address: 3075 Killingworth Lane, Twinsburg, OH 44087

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Setting Up Your Walk! We’re here to make the process nice and easy for you along the way! We’ve outlined several simple steps that will help make planning your walk go smoothly. That way, you can focus on fundraising and having fun at the very walk you helped make happen!

Step 1: Find some helpers!! Who said you had to do this all alone? Recruit volunteers, maybe your friends and family, to be on your committee. The committee’s job will be to approve the parameters of your event. Each person on your committee will choose a role in the planning of your walk. Maybe you have a friend who is a photographer who will take pictures of the event. Or perhaps you have a friend who likes to plan parties– they can help you choose and acquire a venue where the walk will be held.! ! There is a separate section in this guidebook that explains the many roles your committee members can take on (and suggestions on how they can rock at their new jobs). Your helpers and committee members are going to be your most invaluable asset, not only in the planning leading up to your walk, but also on that day!!

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Step 2: Date, Location, and Route! Date & Time! ! The date you choose should be during the months of May through August, sometime in the evening. Since many public parks, boardwalks, etc. generally close after sundown, it is best to plan for your walk to end between 8:30pm and 9:00pm, as the sun will be just about setting at this time. Most walks are generally 2½ to 3 hours long and begin with a one hour (60 min) period to allow for last-minute registration and set up. For this reason, many walks begin at roughly 6:00pm and end at around 9:00pm. If you do not want to schedule your walk at these times, or for that length of time, that is fine! You are in charge of your walk, no one else.

Location & Route! ! Chances are, your walk will be located at a park, school track, mall, boardwalk, etc. The CSF National Offices will collaborate with you to take care of all the legal and financial obligations required by your venue. You should never feel overwhelmed by paperwork. If your venue is asking for a particular document, contact CSF immediately and we will work with you and your venue to get it done.!

There are a few things you may need to have:! - Completed unite@night Application/Agreement ! - unite@night insurance coverage ! !

! !

! !

! !

(Definitely)! (Definitely)!

! !

(Maybe)! (Maybe)!

!*CSF will sign the paperwork as the primary party; you need only be the primary contact!

- Permits required for your venue ! ! ! - Fee to hold your walk at your venue (paid for by CSF)

! !

! !

! It is also important to choose a venue that will work best for your walk’s needs. ! ! Take time to consider: Is the area safe?... Is parking available/necessary?... Are there adequate facilities to meet the needs of your walkers? (Are there sufficient restrooms, shade, seating, concessions, electrical power, handicap-access, etc.)... Will the venue accommodate the number of walkers coming to your walk? ! ! **When you choose your location, they may ask you to plan a route. This is usually done by simply obtaining a map of your venue, and simply drawing a line along the pathway you’d like your walkers to take. ! !

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Step 3: Logistics! It’s time to start figuring out how the day of your walk will be set up! Are you going to have a raffle? Will you be having food donated? Will tables be provided by your venue or will they need to be donated? This is where your helpers come in! Here’s a short list that will help you with your day-of-event Logistics Plan: -  Have any permits/forms required for the event on hand -  Establish your start and finish lines (route) -  Set up symptom marker sponsorship signs (printed by National Office & mailed to you) -  Volunteers should arrive 30 minutes to 1 hr. before registration starts -  Remember: set up will likely last at least an hour

(Important Note: If your walk is located in a public/private venue such as a park, boardwalk, etc., there may be special permits required that you must obtain and complete in order to run your event. For instance, a sound or food permit may be required for your walk. Inquire with your venue whether you will need any special permissions for your planned activities. Depending on what you have planned, your venue will let you know if you need any extra permits. Call or email CSF if you have any questions regarding this process. **If you are planning a super simple walk, with no additions (no raffle, no amplified sound, no food, etc.), then all you will need to consider is a starting line for all your walkers to meet up at!

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Step 4: Fees and Cost! There are several types of fees/expenses that the CSF National Offices will cover for each walk site: - permit fees - insurance costs - bottled water (if not donated) - T-shirts, other promotional materials, and prizes* *Availability of t-shirts a promotional prizes are available based on eligibility of individual walkers and teams The easiest way to keep costs down is to submit requests for donations of goods and services early in advance. More often than not, local businesses are very happy to donate food, water, sponsorships, and other services. All you need to do is ask!

Why Requesting Donations Is Important Requesting donations for your event may seem awkward at first, but it is important to remember that the worst someone can say to you, is “no.” As always, CSF can provide any documents or forms you may need to help you secure donated items. Generally speaking, small businesses love to donate to local fundraisers because it allows them to play an important role in the community, while also providing them with the ability to have their business advertised to a targeted group of people.

Now, let’s talk about getting walkers to attend…

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Step 5: Recruiting Teams and Walkers! It is important to get registered walkers to your event! It’s quite a simple process. The easiest way to find walkers is to first recruit teams. Team leaders can be family members, friends, and supporters. Team leaders are generally the people who are directly connected to you and/or your cause within your local area.

Once you have your team leaders in place, you can encourage them to sign up walkers or team members. They may tap into their different networks to find team members: - family - friends - co-workers - teammates (sports teams, Girl Scout/ Boy Scout troupes, etc.) - fellow members of clubs - anyone else they can think of! The recruitment process will definitely “pay it forward” for your walk! For instance, if you recruit 10 team leaders, and they each recruit 10 walkers/sponsors to donate $50 each, you just raised $5,000 for your walk, with practically no work! The more donations you acquire that are credited to you, the better prizes you will be able to earn! **See the unite@night recognition prize list to see what you can earn by fundraising!

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Symptom Marker Sponsorships! Sponsorships! ! Another great way to raise money is by offering companies or individuals symptom marker sponsorships. See those signs in the picture to the left? Those are symptom markers. ! The sponsor’s name and logo will appear on these markers, which can be posted along the route of your walk to “mark” different checkpoints. If you are not able to set them up along your route, the symptom markers may be posted elsewhere (i.e. along a table, on a fence) simply as signage. !

Symptom marker sponsorships are $50, each. ! !

All sponsorships for the unite@night walk begin at $50 and increase with each company or business’ willingness to give. For example, if a company wants to donate $200, they will receive 4 symptom marker sponsorships. ! ! !**In order to have a symptom marker at the walk, a sponsor must complete a! ! symptom marker sponsorship form. (found at the end of this guide.)
 


In   addition, if you receive non-monetary donations valued at $50+, the donor will still receive a symptom marker with their logo.! ! For example, let’s say a local pizzeria donates $50 worth of pizza or an individual donates $50 worth of paper products… they can have their company or family name printed on their very own symptom marker!! (Contact info & logo will be needed)!

Corporate Sponsorships! You may also submit a request to receive a sponsorship from a corporation or larger company. ! Our Corporate sponsorships have ranged anywhere between $500 and $15,000.! ! ! !Note: Before you request any large Corporate sponsorship, please discuss with! ! !the National Office prior to asking, as many corporations and larger companies! ! !have a “one-donation-request-per-year” rule.!

10  

Running Your Walk! Well Before Your Walk After taking care of any special permits that may or may not be required, make sure your venue has everything you will need to accommodate your walk day activities. An important consideration if your venue is outside is the possibility of rain. Does your venue have a shelter that can be used in case of inclement weather? In case of severe weather, will the venue honor a rain date? This is also a good time to plan deliveries or services that will be offered that day.

Setting Up Your Walk! ! Plan on arriving at your venue at least one hour before registration time to begin setting up your walk. This is the best time for you to set up your registration tables, and any extras like raffle baskets, etc.! ! Any last minute details about the event schedule you wish to go over with your committee and volunteers should be discussed at this time.! !

Registration! As people start to arrive, make sure they have registered online. If they have not already registered online, be sure to register them in-person. This will help drive up the size of your walk!! ! Note: When registering families inperson, you can save time and frustration by writing down one or both parent(s) names. Then, to register each child (under 18), simply write their first name along with their age. !

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Collecting Donations! Document, document, document! It is very important to keep track of where any donations came from – cash, check, or otherwise. A few things you should make a note of, for each donation made on the day of your walk: - Name and E-mail of donor **This is required** to receive tax deduction - Name of Participant / Walker to receive credit for the donation We send out thank-you notes and tax deductible receipts via email to conserve paper and “go-green” which is why an e-mail will be required.!

Remember to be safe!! ! When your walk gets underway, do not leave any donations unattended. For safety’s sake, there should be at least two volunteers over the age of 18 who are willing to stay with the money.! ! **This is especially important to consider if there have been a lot of donations made in cash! We want our walkers to be safe, first and foremost!!

It’s Finally Time to Walk!! ! The most important rule for the activities and the walk itself is to have a great time! The more fun you have, the more likely your walkers will have fun, too.! ! The most successful unite@night walk is a fun walk– not to mention, a walk that people will want to attend year after year!!

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unite@night Solo Walks! You may be unable to plan a unite@night group walk. Maybe it’s just too much of a time commitment right now, or maybe you don’t have the community support yet. But what if you really want to help raise money for the cause? Luckily, you can walk in your own hometown by participating in a Solo Walk! Invite your family, friends and neighbors to join you for support, or head out on your own and take a brief stroll around your neighborhood on any evening you choose during the month of June.!

The best part is, you are entitled to win the same recognition prizes as anyone who is participating in a group unite@night walk!!! ! If you raise $50 or more, you will receive a unite@night T-shirt! The same is true for any additional recognition prizes. Check the list of recognition prizes to see what you can win!!

Solo Walks are almost identical to group walks, with the exception of all the planning stages. You will not need to secure a venue or go through the motions of finding donated water, items, etc. All the walking and fundraising, however, will be exactly the same!! You can call on family, friends, neighbors, co-workers and maybe others not mentioned in this guidebook who you think of along the way to help you meet whatever fundraising goal you have set for yourself. Remember the “pay-it-forward” technique (pg. 9)! Asking a friend to ask a few friends for a small donation, each will help you reach and maybe surpass your goals. You will also be using the Friends-Asking-Friends fundraising website, just as you would with a Group Walk. Once you’ve picked a date, you can gather your friends and family together and walk around your neighborhood to raise awareness for Chiari malformation, syringomyelia and related disorders!!

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Fundraising Module:! Friends-Asking-Friends! CSF uses a fundraising module called “Friends Asking Friends” to keep track of our unite@night walks. Your walk will have its own fundraising website to register teams and walkers. The website will allow your walkers and sponsors to make online donations.! ! You will also be provided with forms to collect additional donations received before, and on the day of the walk. Your fundraising site will keep track of any donation (credit card, cash, or check) made towards your event!! ! Every donation must be credited to an individual walker! If a group was responsible for raising money for your walk, the credit will be split among the individual participants. This will become very important when recognition prizes are awarded. For instance: if one person raises $500, they will be eligible to win a bigger prize than a team of 10 raising the same amount of money. In this case, each member of the team of 10 will have only “raised” $50, each.! ! All checks should be made payable to “CSF”. If a check is made payable to any individual person, the donation WILL NOT be tax-deductible!! Checks can be mailed to the following address:!

CSF Attn: Andrea Grosz 69-39 Yellowstone Blvd. #216 Forest Hills, NY 11375

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Fundraising Ideas! You can start raising money for your walk as soon and as often as you’d like! There are a million different ways to raise money so that donations are cheap, easy to manage, and often fun to acquire! Even better, there is no minimum or maximum amount of fundraisers you or your “helpers” can have. Here are some fun and easy ways to start raising money:

Symptom Marker Sponsorships! The quickest and easiest way to raise money for your walk is by selling sponsorships! Visit local businesses with a sponsorship form (at the end of this manual) and ask if they would consider sponsoring your walk– there is always an opportunity for advertisement! (See page 9)

Other FUN-draising Ideas!! 50/50

Collect loose change

Restaurant fundraisers

Garage sales

Shovel snow for donations

Bake sales

Craft sales

Canning in your neighborhood

Car washes

Candy bar/chocolate sales

Book sales

Lemonade stands

Spaghetti dinners

Comedy nights

Poker tournaments

Plant sales

Any type of “A-Thon”

Golf tournaments

Pancake breakfasts

(i.e.: Bowl-A-Thon, Bike-A-Thon, Read-

Movie nights

Dress down days

A-Thon, Ski-A-Thon, Dance-A-Thon,

Game nights

Guest bartending

Zumba-Thon, etc.)

Holiday gift wrapping booth

…or maybe something else you came up with on your own!

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Walk Committees/Jobs ! for Volunteers! Chairperson

That’s you! Recruits committee chairs and volunteers. Provides backup to all committee chairs. Manages overall timeline. Main contact for city, government, police, & national CSF offices. Obtains permits and handles insurance (with help from CSF).

Sponsor Acquisition & Publicity

Gets sponsors to help cover the cost of the event. Publicizes sponsor names. Works with CSF National Office to create flyers, emails and newsletter articles. Works with the local press or maintains a Facebook page for the walk.

Registration & Treasurer(s)

Makes sure all your walkers are registered and have signed the waiver. Collects donations on the day of your walk, noting donor’s name, their email address and what they donated toward: (i.e. was the donation made for a raffle, 50/50, general donation, etc.?)

Setup/Clean-Up Helpers

Sets up on the day of the walk and helps take it down after it is over. Helps map out the route for the walk, as well as finding the best location to set up registration, food/drink, etc.

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Food & Entertainment

Organizes food/drinks and the music for the event. May find volunteers to do fun activities such as face painting, hair braiding, games, etc. A music CD will be provided by CSF.

Photographer(s)

Gets a group photo of all/as many walkers as they can! Snaps pictures of participants and walk activities. Can help create a slide show to celebrate the successful day.

Volunteers

In charge of anything else that needs to be done! Can give out food, help set up, work at registration table or donation collection, or even go for a coffee run! Volunteers are there to help your event run smoothly– and they’re usually very excited to help out in any way they can!

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Thank You!! We’re so excited to get walking with you this year! If you have any questions or comments, please do not hesitate to contact us. We’re here to make this process simple, so you can focus on having a great time.

Over the past three years, those who have participated in unite@night have shared laughter, tears, and endless amounts of love and support. Thank you for giving us, and everyone who suffers from these disorders, the opportunity to share in that special experience with you. Whether you are feeling frustrated, exhausted, angry, or physically pained– remember that you are doing something to raise desperately needed awareness and education to the public and medical professionals, alike. You are now a part of the movement focused on creating a better life for the over one million families who are struggling with the pain, confusion and hopelessness associated with these disorders.

YOU are providing hope for change!

g n i k a m r o f u o y k F Than S -C

! e c n e r e f f i d a

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CSF unite@night Checklist! Signed unite@night walk Application / Agreement? Committee(s) in place? Set walk date? Venue / Location established? Any required paperwork from venue, signed and submitted? Any additional permits? (i.e. sound, police, etc.) *If having a raffle, start looking for donations for baskets? Start collecting symptom marker sponsorships? Water bottles donated / purchased? Have you coordinated food / snacks? (You can ask volunteers to bake) Contact and receive commitments from face painters, photographers, additional activities volunteers? *If having a raffle, start organizing / wrapping baskets? Continue to collect last-minute symptom marker sponsorships And on the day of your walk, don’t forget: Registration slips and insurance waivers Music/CD player T-shirts & light-up foam sticks Coloring pages and crayons Water & any donations of food Any other last-minute items? ________________________________________________________ ________________________________________________________ ________________________________________________________

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UNITE@NIGHT - SPONSORSHIP FORM CHIARI, SYRINGOMYELIA, AND RELATED DISORDERS SYMPTOM MARKERS unite@night will bring together people who are suffering with the devastating effects of Chiari malformation, syringomyelia, and related disorders. unite@night will support CSF Chapters to provide education and increase awareness while funding research projects that can potentially find answers to help those who are fighting these disorders.

Symptom marker sponsorships are $50. Company/Individual Name: Contact Name: (if different from above) Address: Phone Number: E-mail: City and State of unite@night walk: # OF SPONSORSHIPS @ $50 EACH

TOTAL SPONSORSHIP $

WALKER TO RECEIVE CREDIT FOR SPONSORSHIP

PAYMENT 1 My check made payable to CSF enclosed

1 VISA

1MC

1DISCOVER

1AMEX

CARD NUMBER EXPIRATION_____ SIGNATURE ________________________ SECURITY CODE ____ 1 Please do not include me in the CSF mailings & email notices. Name Company Address City Phone

State

Zip

E-mail

Please mail this form and any checks to CSF, 29 Crest Loop, Staten Island, NY 10312 If you have questions, contact Cathy Poznik at (330) 998-6195 or email [email protected]. CSF is a 501(c)(3) non-profit organization

Updated 12/14

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2016 unite@night

Walk Application & Agreement

The  Chiari  &  Syringomyelia  Founda@on’s  (CSF)  unite@night  is  a  one-­‐mile  casual  evening  walk  in   various   loca@ons   around   the   country   during   the   months   of   May   through   August.   These   walks   bring   together   people   who   are   suffering   with   the   devasta@ng   effects   of   Chiari   malforma@on,   syringomyelia,  and  related  disorders  such  as,  but  not  limited  to:  Ehlers-­‐Danlos  Syndrome  (EDS),   hydrocephalus,  idiopathic  intracranial  hypertension,  dysautonomia,  and  more.     If   you   would   like   to   submit   a   request   to   set   up   a   unite@night   walk   site,   please   submit   this   applica@on  a^er  reading  and  agreeing  to  the  condi@ons  below.  unite@night  supports  local  CSF   Chapters,  as  well  as  large-­‐scale  research  and  educa@on  projects  to  benefit  the  over  one  million   families  in  the  United  States,  alone,  who  suffer  everyday  from  Chiari,  syringomyelia  and  related   condi@ons.   I,  the  undersigned,  hereby  agree  to  the  following  condi@ons  for  the  Chiari  &  Syringomyelia   Founda@on’s  (CSF)  unite@night  walk:     1.  I  will  ensure  that  all  walkers  have  agreed  to  the  Waiver  and  Release  of  Liability,  either  online  or   on-­‐site  at  the  walk.   2.  Any  materials  distributed  on  CSF  leRerhead  must  first  be  approved  by  the  CSF  Na@onal  Office   prior  to  the  distribu@on  of  said  materials.   3.  All  materials  used  at  the  unite@night  walk  should  be  CSF  materials,  or  materials  pre-­‐approved  by   the  CSF  Na@onal  Office  including,  but  not  limited  to:  forms,  brochures,  posters,  T-­‐shirts,  incen@ve   programs,  etc.   4.  CSF  Na@onal  Office  will  cover  the  following  expenses,  only,  for  each  walk  site:  permit  fees,   insurance,  and,  provided  individual  par@cipants  are  eligible,  unite@night  T-­‐shirts  &  giveaways.     *Any  addi+onal,  or  significant  expenses  must  not  exceed  amounts  collected  in  sponsorships/ dona+ons  for  your  walk  and  must  be  approved  by  the  CSF  Na+onal  Office.   5.  Each  unite@night  site  Chairperson  is  in  charge  of  comple@ng  any  paperwork  for  that  site,   including  required  permits.  Copies  of  all  paperwork  and  invoices  must  be  sent  to  the  CSF   Na@onal  Office,  no  later  than  two  weeks  a^er  the  event.  A  CSF  Na@onal  Office  worker  is  always   available  to  assist  with  paperwork.   6.  Each  site  is  required  to  use  CSF  insurance.  The  Chairperson  will  work  alongside  the  CSF  Na@onal   Office  to  complete  the  required  paperwork.   7.  All  invoices  are  to  be  sent  to  the  CSF  Na@onal  Office  for  payment.  All  funds  collected  and  all   receipts  are  to  be  sent  to  the  CSF  Na@onal  Office  within  two  weeks  of  the  walk.  No  expenses  may   be  paid  out  of  revenue  collected,  with  excep@on  given  to  third-­‐party  fundraisers.*   8.  All  funds  raised  will  be  used  to  support  the  CSF  mission  which  includes  support  for  CSF  Chapters   to  provide  educa@on  and  awareness  as  well  as  support  of  research  projects  that  can  poten@ally   find  answers  to  help  those  who  are  figh@ng  these  disorders.   9.  Tax  receipts  will  be  provided  to  donors.  Chairperson  is  responsible  for  all  other   acknowledgements  and  thank-­‐you’s  for  sponsors,  volunteers,  etc.   10.   CSF  will  provide  personal  fundraising  webpage,  as  well  as  a  Facebook  page  for  each  walk  site.   11.   Each  walk  site  will  be  named  the  CSF  unite@night  (City,  State)  Walk.   12.   All  donor  lists  are  the  property  of  CSF  and  cannot  be  used  for  any  other  purposes.  Any  unlawful   distribu@on  or  selling  of  these  lists  is  not  permiRed.        

*Contact  CSF  Na@onal  Offices  to  clarify  “third-­‐party  fundraisers”.  

2016 unite@night

Walk Application & Agreement

CONTACT INFORMATION Name: __________________________________________________________ Street Address: ______________________________________________________ City, State, Zip Code: _________________________________________________ Mobile Phone: ________________________________________ Preferred? Y / N

Home Phone:______________________________________________________ E-mail: ___________________________________________________________

PROPOSED WALK LOCATION (this doesn’t need not be finalized yet) City, State: ______________________________________________________ Date (tentative): __________________________________________________ Location (optional): _______________________________________________ Estimated number of walkers: ___________________ _____ I plan on completing a unite@night Solo Walk. Please add my Solo Walk to the CSF website as a unite@night location.

____________________________________________________

Printed  Name  of  Volunteer  Walk  Site  Coordinator  

_______________________________________ ____________

Signature  of  Volunteer  Walk  Site  Coordinator  

Date  

Please  submit  this  applica;on  &  agreement  to  the  CSF  Chapter  Office:   Chiari  &  Syringomyelia  Founda@on,  Inc.,  Cathy  Poznik,  Chapter  Coordinator   3075  Killingworth  Lane,  Twinsburg,  OH  44087   OR   Scan  and  send  to:  [email protected]   OR   Scan  and  fax  to:  (330)  998-­‐6195  (call  first)   If  you  have  any  ques@ons/concerns,  call  Cathy  at  (330)  998-­‐6195  

 

For  more  informa@on  on  how  to  set  up  a  successful  walk  and  for  great  fundraising  @ps  and  tricks,  please  look  to     your  Walk  Guide.  For  addi@onal  fundraising,  awareness  and  educa@onal  materials,  consider  becoming  a  CSF  Chapter   Representa@ve!  Contact  Cathy  Poznik  (informa@on  above)  for  more  informa@on  on  the  CSF  Chapter  program!     CSF  is  a  501(c)(3)  nonprofit  organiza+on  whose  mission  is  to  advance  knowledge  through     research  and  to  educate  the  medical,  allied  sciences,  and  lay  community  about     Chiari  malforma+on,  syringomyelia  and  related  disorders.