Conference Information and Registration Packet 11th Moebius Syndrome Conference July 18-20, 2014 Bethesda North Marriott Hotel & Conference Center 5701 Marinelli Road North Bethesda, MD 20852 Contact Information [email protected] 240-463-2833 Register online at www. moebiussyndrome.com

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It’s Conference Time! The Moebius Syndrome Foundation invites you to join us for the 11th Moebius Syndrome Conference just outside Washington, DC! Don’t miss this opportunity to meet with others whose lives are affected by Moebius syndrome. Whether you’re a first time attendee or an experienced veteran, you’ll learn about the newest developments with the Moebius community, make connections with others uniquely suited to understand you, and have a blast.

Conference Coordinators Conference Chairs Jacob & Panina Licht [email protected] 240-463-2833

Keynote Speaker

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Speakers & Topics

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Consultation & Research Opportunities

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Registration Fees

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Registration, Consultations, Child Care Sign-ups, and Donations & Journal Ads Marcia Abbott [email protected] 510-304-2302

Scholarships

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Sunday Night Excursion

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Monday Excursion

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Local Raffle Baskets

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Hotel and Transportation

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Registration Form

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Talent Show

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Memory Book Submissions [email protected] Hotel Room-Sharing Chelle Medow [email protected] 314-368-3618

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Inside this Brochure

Child Care & Consent Form

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Teen Bowling & Consent Form

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Donations and Conference Sponsorships

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Memory Book

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Conference Sales Guidelines

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Keynote Speaker James Partridge is the Founder and Chief Executive of Changing Faces, which he established in 1992 to work for the rights and inclusion of people with facial and body differences.

Planned Sessions Jennifer Accardo, MD, Kennedy Krieger Institute Sleep Disorders

Marilyn Miller, MD, University of Illinois Pediatric Eye Problems

Katheleen Bogart, PhD, Oregon State University Social and Communication Skills

Sara Rosenfeld-Johnson, MS, CCC/SLP, Talk Tools®/ ITI/Innovative Therapists International Speech Clarity Three Years through Adult

Gregory Borschel, MD, FACS, FAAP, The Hospital for Sick Children Nerve Regeneration

Floyd Starnes, Principal, Kemp Mill Elementary School Advocating for Your Child in Public School

Jacqueline Diels, OT, UW Health Research Park Clinic Neuromuscular Retraining for Facial Paralysis

Abram Sterne, PhD Understanding ADHD

Elizabeth Engle, MD, Children’s Hospital Boston, Harvard Medical School Moebius Syndrome and Eye Movement

Stephen Wooderson, CEO, CSAVR Vocational Rehabilitation – Services and Employment Outcomes

Renee Roy Hill, MS, CCC/SLP, Crossroads Therapy Clinic Feeding for Infants and Toddlers

Ronald Zuker, MD, FRCS(C), The Hospital for Sick Children, Toronto Smile Surgery for the Moebius Syndrome Patient

Elizabeth Jennings, National Disability Institute Employment for People with Disabilities Philip McClure, Brown University Orthopedic Associations of Mobius Syndrome Sharon McGrath-Morrow, MD, MBA, Johns Hopkins School of Medicine Respiratory Care of Children with Rare Diseases Bobby Medow, CLU, ChFC, Vice President, Merrill Lynch Financial Planning for Your Child with Special Needs

Rick Guidotti, Positive Exposure The Spirit of Difference Just for Moms Just for Dads Just for Grandparents Overcoming Daily Challenges Alternative Therapies Service and Therapy Dogs for People with Disabilities Triumphs Through The Years Internet and Social Media

The Moebius Syndrome Foundation does not endorse any particular type of therapy, treatments or products suggested by the conference speakers. The presentations are for your information only. Opinions expressed by conference speakers and/or attendees do not necessarily reflect those of the Moebius Syndrome Foundation. Special Note: All conference sessions and activities will be in English. Unfortunately, we are not able to provide translation services.

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Consultations and Research Opportunities

There will be opportunities for adults and children with Moebius syndrome, and their families, to participate in evaluations (consults) or research studies. Most will take place during the conference, and are limited in number. The appointments are made as registration is received, so it is important to register early.

EVALUATIONS:

Autism and Moebius syndrome by Dr. Wendy Roberts and her team Dr. Roberts is researching the link between Moebius syndrome and autism in children of all ages as well as adults. Dr. Roberts’ team will conduct evaluations (several hours for participants, as well as parents of child participants) during the conference. Evaluation time can be split throughout the weekend. Smile Surgery evaluations by Dr. Ronald Zuker Dr Ronald Zuker will conduct evaluations and offer more information on smile (gracilis muscle transplant) surgery for children with Moebius syndrome. Parents with children under 4 will meet in small groups. Individual appointments will be made for parents and their children 4 years and over. Speech and Feeding Evaluations for Children and Adults with Moebius syndrome by Sara Rosenfeld Johnson MS, CCC/SLP and Renee Roy Hill MS, CCC/SLP Sara Rosenfeld-Johnson and Renee Roy Hill will once again be available for short evaluations of both speech clarity and feeding skills for children and adults. These 45 minute mini-sessions will give you an overview of the muscle based activities that can be used by both therapists and parents to improve verbal communication and feeding safety. The sessions are offered at a reduced rate of $75, which may be paid at the time of the assessment by cash, check or Mastercard or VISA. Neuromuscular Retraining for Facial Paralysis by Jacqueline Diels, OT Facial retraining is a non-surgical approach to the treatment of facial paralysis and paresis. Just as every face is different, facial paralysis is different in each and every person who has it. For many with Moebius syndrome, certain areas of the face may move, while others do not. During the consultation a brief evaluation will determine the available degree of movement present in the various regions of the face. Participants will gain a better understanding of how their facial muscles work. If appropriate, a potential treatment program will be discussed. 4

RESEARCH:

Genetic Research by Dr. Ethylin Wang Jabs and Dr Elizabeth Engle Dr. Ethylin Jabs from Icahn School of Medicine at Mount Sinai and Dr. Elizabeth Engle from Boston Children’s Hospital are utilizing clinical, genetic and molecular biological approaches to unravel the genetic causes of Moebius syndrome and other associated malformations and will be available with their teams for consultations and research participation during the conference. Research participants may include the adult or child with Moebius syndrome and other family members. Drs. Jabs and Engle will also present more details about this study and describe their new collaborative effort with the National Institutes of Health during the Conference, and representatives from each group will also be available to answer any questions you may have. Musculoskeletal Problems and Moebius Syndrome by Dr. Phillip McClure Dr. Phillip McClure is currently involved in a study of people with Moebius syndrome and orthopedic manifestations. He and his colleagues are interested in gaining further knowledge about Moebius syndrome and associations with musculoskeletal problems in the spine, hips and extremities. They ask those who sign up for the appointment to bring a copy of any x-rays or other orthopedic studies for them to keep. People with Moebius syndrome of all ages are invited to participate in the study. Research study on a Social Skills Program for Teens 13 to 18 by Dr Kathleen Bogart “Getting Social with Moebius” is designed to improve communication skills and boost confidence in teens. Participation may involve coming to the conference one day early with some reimbursement to the family. If you are interested, please contact Dr. Bogart at kathleen. [email protected] or 541 737-1357.

Registration Fees

Registration fees are detailed on the registration for on page 8. Fees include attendance at all conference sessions and activities (except teen bowling and the Sunday night and Monday excursions), as well as dinner on Friday, continental breakfast, lunch, and dinner on Saturday, and continental breakfast and lunch on Sunday.

First-time Attendee Scholarships

A limited number of scholarships will be available to first-time adult conference attendees who have a financial need. The recipient can be an adult with Moebius syndrome or a parent of a child with Moebius syndrome who has never attended a Moebius Syndrome Foundation conference. Only one scholarship can be awarded per family. The $500 scholarship will be offered in the form of a waived $220 adult registration fee plus $280 to be used towards registration fee(s) for other family members (on the registration form) or reimbursement of $280 for hotel or travel expenses. If the $280 is used for hotel or travel expenses, it will be paid at the conference when the adult or family signs in. Scholarships may be requested only when you register for the conference. If you plan to request a scholarship you must use this registration form and mail it in. You cannot register online if you request a scholarship. Scholarship requests will be accepted in the order in which they are received, so it is important that you mail in your registration form early.

The MSF Talent Show Returns!

Join us Saturday night as we showcase the many talented members of our community. We’ll provide a CD player, microphone, and keyboard. Each act should include at least one individual with Moebius syndrome, and should be limited to three minutes. Material must be suitable for all ages. Please sign up by noon on Saturday, July 19 to reserve a spot.

Sunday Night Tour of the Monuments

Don’t miss the opportunity to appreciate the beauty of Washington, DC at night. Our three hour guided tour by chartered bus will depart the conference hotel at 6:30 pm, Sunday, July 20, and take you around the illuminated landmarks of the city. Please refer to page 8 for prices and registration.

Monday Excursion

Please join our guided chartered bus tour of the highlights of Washington, DC on Monday, July 21. The motor coach will leave the conference hotel at 9:00 am and return at 6:00 pm. We’ll head downtown for a tour of the US Capitol, a trip to the Smithsonian Air & Space Museum, and visits to many of monuments and memorials that make DC famous. Lunch will be on your own at the Air & Space Museum. Please refer to page 8 for prices and registration.

Local Raffle Baskets

Bring the flavor of your hometown, state, or country to our conference. The basket can reflect where you live, including local foods, sports, universities, and crafts. Your basket will be raffled off at lunch on Sunday. All proceeds go towards deferring conference costs. 5

Hotel and Transportation The 11th Moebius Syndrome Conference will take place at the Bethesda North Marriott Conference Center, 5701 Marinelli Road, North Bethesda, MD 20852 located just outside Washington, DC. The special conference rate of $109 ($123.17 with tax) is good from July 13 through July 23. If you plan to drive, please note that self-parking is $15/day. Hotel Reservations To receive the conference room rate, you must book your room(s) by June 18, 2014. After that date, the hotel cannot guarantee room availability. You can reserve your room(s) online through the link on the registration website, by going to https://resweb.passkey.com/Resweb.do?mode=welcome_gi_new&groupID=20131228 or by phone at 1-800-228-9290 or 1-301-822-9200. A limited number of cribs, refrigerators, and ADAaccessible rooms are available. Note your special request in the Additional Requests section of the online form when you make your reservation. Hotel Room-Sharing If you’d like assistance in finding someone with whom to share a hotel room, please contact Chelle Medow at [email protected] or 314-368-3618. About the Hotel The 436 room Marriott Hotel & Conference Center is the area’s premier conference center. There are two on-site restaurants, the causal upscale Meritage, and On the Rocks for casual dining. The coffee bar & snack shop serves Starbuck’s coffee. There is a 24hour complimentary fitness center and small heated pool. The surrounding area has several other food and shopping options. The DC area’s train, the Metro, has a Red Line stop practically in front of the hotel, offering easy access to the sights and experiences of the nation’s Capital. Getting to North Bethesda and the Hotel By air: Baltimore Washington International Airport (BWI), Reagan National Airport (DCA) and Dulles International Airport (IAD) are all within an hour of the hotel. 6

We have negotiated with Super Shuttle/ExecuCar to provide discount services from all three airports to the conference hotel. You can view the different travel options and make your reservation from our exclusive link at http://www.supershuttle.com/ default.aspx?GC=R6YQ7. The discount code is R6YQ7, and should automatically be applied from that link. PLEASE NOTE: To find the conference hotel, you must put in “Marriott North” in the Hotel/Landmark Search to locate the correct hotel. Rates on Super Shuttle for shared van: Round trip from/to BWI: $42 for the first person, $12 for each additional person up to 10 people, $2 fuel fee, and a $5 discount per group. Round trip from/to Washington National: $29 for the first person, $10 for each additional person up to 10 people, and a $5 discount per group. Round trip from/to Washington Dulles: $30 for the first person, $10 for each additional person up to 10 people, and a $5 discount per group. Cabs are also available. They run at minimum $55 from Dulles, $60 from Reagan National, and $70 from BWI. Reagan National is on both the blue and yellow lines of the Metro. You can take the blue line from the airport to Metro Center to transfer to the red line toward Shady Grove. If you take the yellow line, you can transfer to the red line at Gallery Place and take the red line toward Shady Grove. The hotel is next to the White Flint metro station. By rail: Amtrak comes into Union Station, which is 20 miles from the hotel. The red line of the Metro stops at Union Station and goes to White Flint station, located next to the hotel. By bus: Greyhound, Peter Pan, and other bus companies serve Washington, DC. By car: Directions to the hotel from your location can be found at the hotel website: http://www.marriott. com/hotels/maps/travel/wasbn-bethesda-northmarriott-hotel-and-conference-center

Registration Form

Please note: This registration form is five pages. Be sure to complete all pages. You must additionally submit the childcare and teen bowling registration and consent forms if you are registering anyone who plans to participate in those activities. You must also include your check when you submit your registration to Moebius Syndrome Foundation, PO Box 20354, Oakland, CA 94620-0354. You can also register online through the Moebius Syndrome Foundation website, www.moebiussyndrome.com or go directly to www.regonline.com/11thmoebiussyndromeconference. If you register online, you may pay online with a credit card, or by check sent to Moebius Syndrome Foundation, PO Box 20354, Oakland, CA 94620-0354. Please print names as you would like them to appear on conference badges. Please list a head of household first.

Adults (18 and older as of July 18, 2014) First Name

Last Name

First Name

Last Name

First Name

Last Name

Children and Teens First Name

Last Name

Age

First Name

Last Name

Age

First Name

Last Name

Age

First Name

Last Name

Age

Address and Contact Information ❑ Please check if you do NOT want to be included in the conference roster. Name, state, email, and phone number are listed Street State

City Home phone

Cell phone

Zip/Postal Code

Country (if outside U.S.)

Email

❑ I am/My family is attending the conference for the first time. List names of adults and teens only who are first time attendees:

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❑ I am a first-time attendee adult with Moebius syndrome with a financial need, and am applying for a scholarship. ❑ I am the first-time attendee parent of a child with Moebius syndrome with a financial need, and am applying for a scholarship. ❑ I request to use the additional $280 towards the registration fee(s) of the following family members: ________________________________________________________________________________________________________ ________________________________________________________________________________________________________ ❑ I request reimbursement of $280 towards hotel and/or travel expenses. I understand I will receive the reimbursement at the conference. Category

Number of registrations in this category

Early registration (received by June 18, 2014)

Standard registration (received after June 18, 2014)*

$220

$245

Teens (ages 13-17)**

$170

$190

Children (ages 4-12)**

$100

$110

Children (ages 0-3)** and tube-fed individuals

$0

$0

Sunday Night Tour of DC

$15

$15

Sunday Night Tour of DC (ages 0-3)**

$0

$0

Monday excursion

$30

$30

Monday excursion, (ages 0-3)**

$0

$0

Teen bowling (ages 12 and older)**

$20

$20

Adults

Total

Adult (scholarship)*

Total Additional amount for donation (See page XX.)

*Based on Scholarship eligibility and availability **Based on age as of July 18, 2014

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$

$

Grand Total $

Special Meals Names of People Who Require Vegetarian Food Names of People Who Require Kosher Food Names of People Who Require Lactose-Free Food Names of People Who Require Gluten-Free Food

Photo Release I give permission to the Moebius Syndrome Foundation to use (in newsletters, on the website, at the conference slide show, etc.) any photographs taken at the conference in with I or any member of my family may appear. Signature

Date

Consultations and Research You may request consultations or participate in research at the conference. Your session(s) will be scheduled and you will receive an appointment time prior to the conference. Requests will be confirmed via email or phone. A limited number of appointments may be made at the conference itself. Name of person(s) participating in consult/research Cell phone number

Parent/Guardian Name (if applicable)

Age(s) at time of conference, if under 18

Date/Time of Arrival at Hotel

❑ Neuromuscular retraining for facial paralysis consults, Jacqueline Diels, OT ❑ Genetic research, Elizabeth Engle, MD and Ethylin Wang Jabs ❑ Please check if you have you previously participated in this research. ❑ Speech and feeding evaluations for children and adults Sara Rosenfeld-Johnson, MS, CCC/SLP and Renee Roy Hill, MS, CCC/SLP, ❑ Musculoskeletal problems, Philip McClure, MD ❑ Autism and Moebius syndrome, Wendy Roberts, MD, FRPC(C) ❑ Smile surgery information and evaluation, Ronald Zuker, MD, FRPC(C) ❑ Social Skills Program and Research Study for Teens 13 – 18, Kathleen Bogart, PhD

Talent Show Sign-Up For Children and Adults with Moebius Syndrome Name & age (if under 18)

Talent (including music needed, if applicable)

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Child Care & Consent Form Child care will be available for children ages 6 months to 12 years who have been registered for the conference. You may also register online by following the link from the registration page or by going to https://www.kiddiecorp.com/moebiuskids.htm Name

Age

Name

Age

Name

Age

Name

Age

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Teen Bowling Registration and Consent Form Our sixth annual teen bowling outing is Saturday, July 19. Teens 12 or older are invited to join us for a fun afternoon at the bowling alley. The cost of this event is not included in the conference fee, but for just $20, we’ll have bowling for two hours, including transportation, shoe rental, soda, and pizza. Please sign up on the conference registration form, complete the form below, and return them together. Space is limited, so sign up now. Teen’s First and Last Name

Age as of July 18, 2014

We/I allow our child or ward to attend the Moebius Syndrome Foundation’s teen bowling trip. Parent/Guardian Name

Cell Phone #

Parent/Guardian Name

Cell Phone #

Signature

Date

Signature

Date

Basket Donation ❑ Yes, I plan to donate a local basket to the raffle.

Please mail registration form and check made payable to “Moebius Syndrome Foundation” to: Moebius Syndrome Foundation PO Box 20354 Oakland, CA 94620-0354 Online Registration You can also register online at www.moebiussyndrome.com or go directly to www.regonline.com/11thmoebiussyndromeconference If you register online, you may pay online with a credit card or by check to the above address. (If you register by mail, you must include your check with your registration form.) 11

Moebius Syndrome Conference

Sponsorship Opportunities Please consider supporting the 2014 Moebius Syndrome Conference with a sponsorship. Your generous contribution will help with the cost of the conference or the conference scholarship fund. The Moebius Syndrome Foundation is a 501 c (3) charitable organization, and your sponsorship will be tax-deductible to the fullest extent of the law. EIN is 13-3753992.

GOLD SPONSOR - $5,000 and above As a gold sponsor you will receive:

 Full page (7” x 9.5”) color Journal Ad in the Conference Journal, (with your logo) on the inside front cover of the Journal  Be acknowledged as a gold sponsor at the conference.  Your organization or company’s logo will be featured on the back of our conference t-shirts

here

Amount: $

SILVER SPONSOR - $1,000 - $4,999  Full page (7” x 9.5”) color Journal Ad in the Conference Journal Be included (with your logo) on the front page of the Journal Be acknowledged as a silver sponsor at the conference Amount: $

SPONSOR - $500 - $999 As a sponsor you will receive:

A full page (7” x 9.5”) color Journal Ad in the Conference Journal, (with your logo) on the front page of the Journal Be acknowledged as a sponsor at the conference Amount: $

OTHER DONATION

You will be acknowledged in the Conference Journal. Amount: $

ad

As a silver sponsor you will receive:

Y o ur JOURNAL AD

Your black & white Ad will be featured in

the Conference Journal

Your donation will be acknowledged in

the Journal

P P P P P

Full Page (7” x 9.5”) Half Page (7” x 4.75”) Quarter Page (3.5” x 4.75”) Business Card (3.5” x 2.5”) Listing of Friends: (Name & 1-Line Message)

$400 $200 $100 $ 50 $ 25

Name: Message (90 characters maximum):

CONFERENCE SCHOLARSHIP FUND Amount: $

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This fund will be used to provide conference scholarships to waive registration fees for adults and families with Moebius syndrome who are attending a conference for the first time and have a financial need. You will be acknowledged in the Conference Journal. Winter 2014

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WAYS TO SUBMIT YOUR DONATION

U Mail form (at left) and your donation by check (made out to Moebius Syndrome Foundation) to: Moebius Syndrome Conference PO Box 20354 Oakland CA 94620-0354

UMake your donation through www.moebiussyndrome.com by clicking the DONATE button.

If donating online, please complete the form (at left) and either mail it to the address above, or attach via email to [email protected]. Online payments will be made through PayPal via the Moebius Syndrome Foundation website: Date:

16 Digit Receipt Number:

UIf you are registering for the Moebius Syndrome Conference, you may make your donation at the time of your registration through the Conference Website. If donating online, please complete the form (at left) and either mail it to the address above, or attach via email to [email protected].

PPayment made through the Conference Website with my Conference Registration Date Registered: Registration ID Number: Paid Online OR Paid by check (check number:

and date:

).

HOW TO GET YOUR JOURNAL AD TO US You may email your completed Journal Ad to [email protected]. Acceptable file formats include: PDF and JPG. You may email this form with your Journal Ad. If you need to have your Journal Ad designed, you may email or mail us your text and photos along with this form and the payment. COMPANY OR INDIVIDUAL NAME: ADDRESS: CITY:

ST:

EMAIL:

PHONE:

PLEASE SUBMIT YOUR DONATIONS BY

ZIP:

MAY 15, 2014 SO THAT WE CAN BE SURE TO INCLUDE

YOUR JOURNAL AD AND ACKNOWLEDGE YOUR DONATION IN THE CONFERENCE JOURNAL.

Questions? Email [email protected] or phone 510 304-2302 Moebius Syndrome News

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Memory Book Individuals with Moebius Syndrome or their families are encouraged to submit a photo and write up to 300 words about themselves to be included in the conference journal. Send your submission to [email protected]. To be included, we must receive your submission by June 18, 2014. There is no charge and you do not need to register for the conference to make a Memory Book submission.

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Conference Sales Guidelines The Moebuis Syndrome Foundation accepts applications from Moebius Syndrome Foundation members to sell products at the conference. Products must be approved by the foundation's board of directors. Because we are a nonprofit organization, we may not sell political or religious items. Applicants who are approved to sell at the conference must donate a percentage of sales or minimum dollar amount to the Moebius Syndrome Foundation, as agreed with the board of directors. How to Submit Your Proposal Submit a proposal that includes a description of the product, how many of the item you plan to sell at the conference, what you plan to charge for the item, a sample of each item, & your name, address, phone number and email address. Your proposal should also include your minimum donation or percentage of sales you will donate to the foundation. For consideration of approval for the 2014 conference, you must submit your proposal in writing by April 30, 2014. The foundation's board of directors will review your proposal and either approve or deny your request in writing by May 21, 2014. The seller will be responsible for bringing their products with them and must coordinate with the conference chair at least two weeks before the conference. The seller must submit their donation to the foundation by July 20, 2014. Submit proposals to: Moebius Syndrome Foundation PO Box 147 Pilot Grove, MO 65276

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PO Box 20354 Oakland, CA 94620-0354

Non-profit Org. US Postage PAID Oakland, CA Permit #2508

Address Service Requested

11th Moebius Syndrome Conference Friday July 18 ­­Sunday July 20, 2014 June 18, 2014 is the Deadline for

Special Hotel Room Rate Conference Early Registration Rate Memory Book Entries Register online at www.moebiussyndrome.com 16