FAMILY REGISTRATION GUIDEBOOK 19 CFC INTERNATIONAL Are you ready for an adventure?

We're gearing up for so much fun this October!

The 2021 UK Family Meetup with take place October 29 - 31, 2021 at the Calvert Lakes Trust in Keswick, .

This is the first time CFC International has hosted an event specifically for CFC syndrome families in the and Ireland. We hope it will truly be one of the most memorable events for our families. We are excited that we'll be experiencing this all together! We have a lot planned for one weekend, and we're excited to host a Halloween disco on Saturday evening for families to dress in their most exciting costumes and have a little fun. This event is designed to bring our families together to have fun and spend time with one another, but it is not a medical based conference.

The following booklet will help you prepare for a truly wonderful experience this year! Please take the time to read through this booklet, as many of your questions will be answered here. If you have questions beyond what's in this booklet, you may contact CFC International at [email protected].

We can't wait to see you Keswick! CONFERENCE REGISTRATION INFO

We are expecting an increased level of excitement about the event this year, so we are asking that you register once you've confirmed your ability to travel to Keswick, Cumbria, and attend the UK Family Meetup. We will limit registration to the first 10 families, evaluate accommodations, and then open registration up for an additional 5-10 families. Registration cancellations must be received by August 31, 2021. We understand that by the very nature of caring for someone with CFC Syndrome, last-minute emergencies could occur, but please notify CFC International immediately.

The following registration fees are as follows**: -First Adult Parent or Guardian - £250 -Child with CFC Syndrome - FREE -Second Adult Parent or Guardian - £150 -Siblings - £150 per sibling

**Registration will not be considered complete until payment is made in full. Families applying for a scholarship/stipend will be able to designate that at registration and your space will be held until scholarship decisions are made.

The adult registrations may apply to an immediate family member, caregiver, or other designated family member assisting with travel and care at the event. Siblings may attend the event, but we ask that you discuss registration for more than 2 siblings with a member of the CFC International team.

DEADLINE FOR REGISTRATION: AUGUST 31, 2021 (Deadline date does not ensure availability) CONFERENCE REGSITRATION INFO

ATTENDEE DIRECTORY RELEASE At each conference, we compile a list of contact information for the families in attendance. All registrants will be included on the list unless you request removal before October 15, 2021. After this deadline, the contact list will be printed and no changes can be made.

RELEASE OF LIABILITY/USE OF PHOTOGRAPHS By registering for the UK Meetup, attendees waive, release and discharge all rights, actions, and claims which they or their heirs, executors, or assigns may have against CFC International or its officers, directors, staff, volunteers, representatives, successors, and assigns for death, injury, loss or any and all damages which the attendee or attendee's child sustains and/or suffers in connection with participation in this event. By registering for this conference, attendees grant permission to CFC International to use their or their child's photograph in legitimate accounts and promotional and educational materials. Attendees receive no compensation for the use of their or their child's photograph. To exclude the likeness of your child or any individual of your family from promotional use, you must contact CFC International in writing (via email), with confirmed receipt. LOCATION INFO

LOCATION The event is located at the Lake District Calvert Trust. A registered charity for over 40 years, Calvert Trust has been welcoming guests with disabilities to their dedicated centre, so that they can enjoy the benefits of outdoor activities in a safe and accessible, yet challenging environment. Although part of the Calvert Trust family, with other centres in Exmoor and Kielder, the centre in the Lake District was the first to open and retains a unique feel and approach.

Set in a stunning location overlooking Lake, their main center is fully accessible throughout, with their own stables and boathouse at separate nearby locations. Calvert Trust endeavors to run as many activities as possible out in the wider Lake District so that our attendees also get to explore one of the most beautiful parts of the UK.

Staff and Trustees contribute to the Calvert Trust belief that "it’s what you can do that counts."

Families will stay in cabins, and bunk together as a family with the goal to keep a family and all of its members in the same or adjoining rooms. This means that registering early will ensure the best experience for your family.

The Lake District Calvert Trust Little Crosthwaite Keswick Cumbria CA12 4QD CONFERENCE INFO

Additional Accommodations* Families or family members wishing to arrive early or stay later to enjoy all the Lake District offers may reserve accommodations at one of our suggested locations.

These hotels and B&B's are all within a short drive of Calvert Lakes. Most prices include breakfast and some of the hotels have family rooms. Most claim to be accessible, but contact before booking to discuss your needs.

Ravenstone Lodge Cozy hotel set in converted farm buildings offering dining, a bar/bistro & free breakfast. Two-minute drive from Calvert Lakes Double rooms start at £149 per night https://www.ravenstonelodge.co.uk/

Lyzzick Hall Hotel A luxury, family-run country house hotel and restaurant near Keswick in The Lake District National Park. Lyzzick Hall is a perfect base for a walking, sight-seeing or relaxing break. Three minute drive from Calvert Lakes Standard double rooms start at £172 per night http://lyzzickhall.co.uk/tariff-2021/

Additional accommodations in Keswick may be found at www.booking.com.

Family members wishing to attend the Saturday Night Halloween Disco ONLY must purchase a ticket for £30. Tickets are based on availability. Please contact CFC International at [email protected].

If your family or any of its members wish to stay off property, but participate in activities, you must contact CFC International for availability. Priority for activities is given to families staying on property. Participation cannot exceed limits set by Calvert Trust. Schedule of Events

All events listed below are included in your registration fee.

FRIDAY, OCTOBER 29, 2021 16:00 Arrival and Check-In: Visit the registration desk to receive your name badges, t-shirts, goodie bags, and program. 17:30- 18:30 Opening Reception and Dinner

SATURDAY, OCTOBER 30, 2021 7:00 - 8:00 - Breakfast 8:00 - 12:00 Family Activities Enjoy the day zip lining, canoeing, and participating in fun accessible activities with fellow CFC Syndrome families. 13:00 - 15:00 - Lunch 15:00 - 17:00 - Family Round-table 18:00 - 20:00 - CFC Family Halloween Disco and Dinner!

SUNDAY, OCTOBER 31, 2021 7:00 - 8:00 - Breakfast 8:00 - 11:00 - CFC International Expert Sessions 12:00 - Lunch, Depart or participate in extra activities. MEALS

Included in Registration 5 Meals are included in your registration for the conference: Friday Dinner Saturday Breakfast Saturday Lunch Saturday Dinner Sunday Breakfast

Special dietary needs: Please include any dietary needs when registering. Calvert Lakes and CFC International can accommodate the following requests: dairy-free, vegetarian, and gluten-free. If your child is on a feeding tube, please prepare meals in advance or bring necessary nutritional supplementation. Calvert Lakes cannot provide a blender for blended diets. If you need options for heating or refrigeration of purees or blended meals, please contact CFC International before August 31, 2021, at [email protected]. Quick Sheet

Conference Registration: www.http://www.rsvpbook.com/CFCUKMeetup Deadline: August 31, 2021 Cancellation Deadline: August 31, 2021

Location: The Lake District Calvert Trust Little Crosthwaite Keswick Cumbria CA12 4QD

Quick Schedule of Events, October 29- 31, 2021 October 29, 2021: Arrival at 16:00 October 30, 2021: Calvert Lakes Activities; Family Round-table; Halloween Disco (Bring your costume!) October 31, 2021: Keynote Session and Sessions Departure, Lunch or additional activities at 12:00

Contact Information: [email protected] See you in Keswick!