XP Family Support Group

Tuesday Tip Traveling? When you have a rental car you can bring UV window clings to put on the vehicle for UV safe travel. Make sure to meter the window cling before traveling.

Tuesday Tip Ask your doctor or clinic if you can be roomed upon arrival if your waiting room is not UV safe.

Make sure to check your doctors Otoscope with a light meter, not all otoscope are UV safe. You may want to purchase a UV safe one to take with you to the doctor. Many families have purchased one from Amazon or Doctor Mom.

Make sure you take your Vitamin D!

Live in California? Looking for a quick refinance? Give me a call. Looking to lower your current interest rate? Go to a 15 year mortgage? Pull money out for repairs or upgrades? Give me a call 916-628-3814 NMLS #1517644 For every loan I will donate $1000 to XPFSG!

Tuesday Tip: Countdown has just begun. Fall back is Sunday November 1st. Celebrate daylight savings and have a party. Invite some friends and family over just after sunset. This will show your friends and family how important it is to an XP family to have more safe time outdoors.

TUESDAY TIP: From Miranda Murphy Separate your Velcro into zip lock bags! Put the hook sides in one bag and the loops in another to prevent the dreaded "Velcro ball"

https://youtu.be/oqtIxhSBKq8

Owl Patrol turns 20! Time to celebrate! Owl Patrol will be back in 2021 but not as we know it. We cannot ignore that the current pandemic has meant we have to change the way in which we do things. Owl Patrol 2021 will be virtual and take place on 13 & 14 February and will be held on-line. We are disappointed that we will not be able to have our families at St Katharine's but we do hope you will like our new concept. This year you will have "Camp in Box". All UK campers will r...eceive a package at home before camp starts containing all you need to experience our very first virtual camp. We will have lots of activities for all ages including adults, and all will be on a Olly's Birthday theme and will be led by the Volunteers by Zoom who will be based at St Katharine's. For campers from abroad, we will provide you with a list of what you will need to participate. We will have our usual sessions and workshops with the XP National Clinical Team. To take part in camp you will need access to a broadband connection and laptop or tablet. If you do not have access it is very important that you let us know as we are working to ensure that all families are able to participate. If you would like to take part, please complete the application form and return by 30th November 2020 Please apply here https://xpsupportgroup.org.uk/owl-patrol/

Tuesday Tip: When traveling on a plane remember you can obtain pre-boarding. This will allow you to sit away from a window and also allow you to get onto the plane sooner to avoid UV exposure in the terminal. Also if you are in a terminal that is not UV safe you can request a cart to drive you from point A to point B to get you to your gate sooner or you can ask for wheelchair assistance.

Tuesday Tip: Consider ordering a medical bracelet for your child. This will help in an emergency to alert responders of their condition. Sample wording: Xeroderma Pigmentosum do not exposure to UV light or sunlight. Include your child's name and your contact number.

Tuesday Tips: When visiting an amusement park keep in mind many have special ride accommodation passes. These passes allow you not to have to wait in long lines in the sun. To obtain a pass talk to the guest services desk at the amusement park and explain your situation. You can also try calling before you arrive to speak to someone about your situation.

Tuesday Tip: Do you struggle with your little one to get gloves on? If you are needing a quick cover up try socks, they are a quick way to protect from UV. Have a great tip, email [email protected] or send a message.

Getting ready for school can be a challenge. Check out these resources from Teddington Trust to help educate Teachers, Classmates, and Parents about XP and genetics! https://www.teddingtontrust.com/schools-hub.html

Tuesday Tip: Did you know that Xeroderma Pigmentosum patients can qualify for a handicap parking permit? You need to speak with your doctor to obtain your state,s paperwork. This will allow you to park closer to building's and help lower your UV exposure.

Tuesday Tip: When traveling you can make or purchase temporary curtains to block out UV in hotel or friends homes. All you need to do is purchase tension rods sew fabric in panels so you can change the width for the window you need to block. Sew panels with pockets. You can also purchase UV blocking curtains.

Ortho Dermatolgics is the only company that offers scholarships for students with skin conditions. Help us congratulate XPFSG student Aimee who was honored to receive one this year! Thank you for the work you do Ortho Dermatologics! If you are a high school senior make sure you apply for next years scholarship! Also visit XP Family Support Groups website there are a list of scholarships you can apply to.... https://www.aspirehigherscholarships.com/scholarship-2020.h #orthodermatologis, #ThisisXP, #raredisease, #xerodermapigmentosum, #rareskindisease

To our families in Morocco please reach out to Ahmed Zainoun, he is assisting XP Famiilies and can provide you with a wealth of information.

Wonder tip from one of our XP moms Angie May! She is applying snaps to the sleeves and gloves to make sure fabric of sleeve stays down! Also great way not to loose your glove! Thanks for sharing! You have been entered into our new quarterly cool idea drawing drawing held 11/1! #thisisXP