Last day of Epidermolysis Bullosa Awareness Week 2019

As  Epidermolysis Bullosa Awareness Week come to a end today,  we don’t have to stop spreading  awareness about EB, there are still great ways to spreading all thought the year. 

Did you know know that Debra Canada has a online shop and you can buy things to help Support Debra Canada, also when you buy things from their online shop you be helping spreading EB awareness through out the year, and helping a wonderful cause also. You can get a EB pin,  DEBRA Butterfly Pop Socket key chain and many more stuff you can buy also , Hear is the link to Debra Canada online shop: https://debracanada.donorshops.com/products/shop

As you seen this week that Debra Canada dose a lot of the EB Community if it was not for them people with EB would not be able to get the things they need to help us on a day to day base, also they would not be able to go to send EB family’s to a DEBRA Care Conference, or help cover traveling cost to EB clinics, and more. but most of all Debra Canada would not be able to do all the things they do without the help from people donating to this wonderful cause.  

There is still time to donate to my fundraiser page: By donating to my fundraising page your name will be enter in to a draw to have a change to win this beautiful Crocheted kitchen set.

Link to my fundraising page. https://interland3.donorperfect.net/weblink/weblink.aspx?name=E920311QE&id=20&cfifid=54&fbclid=IwAR3lzWMIC6NMLbXFHtRYRiudIqUj4mW-idWOb4DO8Tuli_3ui2fC_u21fxo

Please feel free to share my fundraising page  and my posting with your family and friends on your social media pages or via email.

 :#debracanada  #ebawarenessweek 

Day 6 of Epidermolysis Bullosa Awareness Week 2019

Day 6 of Epidermolysis Bullosa Awareness Week did you know that Debra Canada helps family’s out with travel cost for family’s to go to EB conferences though out the year. Last year they have helped out 13 EB family’s to attend a DEBRA Care Conference in Arizona, USA. Debra Canada would not be able to send those family’s to a DEBRA care Conference if it was for the donation they get form community.

I have set up a fundraising page to help raise money for Debra Canada. Link to my fundraising page. https://interland3.donorperfect.net/weblink/weblink.aspx?name=E920311QE&id=20&cfifid=54&fbclid=IwAR3lzWMIC6NMLbXFHtRYRiudIqUj4mW-idWOb4DO8Tuli_3ui2fC_u21fxo



Please feel free to share my fundraising page and my posting with your family and friends on your social media pages or via email.



:#debracanada #ebawarenessweek

Day 5 of Epidermolysis Bullosa Awareness Week 2019

Day 5 of Epidermolysis Bullosa Awareness Week did you know that Debra Canada has a butterfly ambassador wish program, people that has EB and would like to have there wish granted. When donating to Debra Canada you can be helping Adults/child grant there EB wish.

I have set up a fundraising page to help raise money for Debra Canada. Link to my fundraising page. https://interland3.donorperfect.net/weblink/weblink.aspx?name=E920311QE&id=20&cfifid=54&fbclid=IwAR3lzWMIC6NMLbXFHtRYRiudIqUj4mW-idWOb4DO8Tuli_3ui2fC_u21fxo



Please feel free to share my fundraising page and my posting with your family and friends on your social media pages or via email.



:#debracanada #ebawarenessweek

 

Day 4 of EB awareness week 2019

Day 4 of Epidermolysis Bullosa Awareness Week did you know that DEBRA Canada has a EB hand book for family’s and medical community. The EB handbook can help new family’s and doctors to learn more about EB. You can download a PDF of EB handbook just got to https://www.debracanada.org go to the bottom of page and click on the EB handbook to down load it.

I have set up a fundraising page to help raise money for Debra Canada. Link to my fundraising page. https://interland3.donorperfect.net/weblink/weblink.aspx?name=E920311QE&id=20&cfifid=54&fbclid=IwAR3lzWMIC6NMLbXFHtRYRiudIqUj4mW-idWOb4DO8Tuli_3ui2fC_u21fxo



Please feel free to share my fundraising page and my posting with your family and friends on your social media pages or via email.



:#debracanada #ebawarenessweek 

Day 3 EB awareness week 2019

Day 3 of Epidermolysis Bullosa Awareness Week did you know when any one donated money to Debra Canada they are also helping people and family’s with EB to be able to get things they may need, this is Emily Boros-Rausch, Emily was able to get specialty boots and Moccasins. This is Max and Malia Graf they were able to received a MicroSilk Hydortheraphy Bath tub. By making a donation to Debra Canada those 3 people was able to received help get the stuff they need to help them on a day to day basis.

I have set up a fundraising page to help raise money for Debra Canada. Link to my fundraising page. https://interland3.donorperfect.net/weblink/weblink.aspx?name=E920311QE&id=20&cfifid=54&fbclid=IwAR3lzWMIC6NMLbXFHtRYRiudIqUj4mW-idWOb4DO8Tuli_3ui2fC_u21fxo



Please feel free to share my fundraising page and my posting with your family and friends on your social media pages or via email.



:#debracanada #ebawarenessweek

Day 2 EB awareness week 2019

Day 2 of National Epidermolysis Bullosa Awareness Week, did you know that Debra Canada has a medical assistance fund? They help support with medical needs that are not covered by provincial Health or private insurance in Canada. With the help of people donating to Debra Canada they can help family’s that needs help with medical care. I have set up a fundraising page to help raise money for Debra Canada. Link to my fundraising page. https://interland3.donorperfect.net/weblink/weblink.aspx?name=E920311QE&id=20&cfifid=54&fbclid=IwAR3lzWMIC6NMLbXFHtRYRiudIqUj4mW-idWOb4DO8Tuli_3ui2fC_u21fxo



Please feel free to share my fundraising page and my posting with your family and friends on your social media pages or via email.



:#debracanada #ebawarenessweek

 

First day of EB awareness week 2019

Today marks the first day of National Epidermolysis Bullosa Awareness Week, This week I'm going to share information about EB and about the Organization that helps support people with EB. Debra Canada is the Organization that helps Support family’s with EB in Canada , Debra Canada was founded In 1998 in Ontario, there is 13 board of directors and officers. I will be posting some Debra Canada Highlights this week also. also By donating to Debra Canada you will be helping families with EB. Also once again I have set up a page to help raise money for Debra Canada. Link to my fundraising page. https://interland3.donorperfect.net/weblink/weblink.aspx…

Please feel free to share my fundraising page and my posting with your family and friends on your social media pages or via email.


#debracanada #ebawarenessweek

Rare Condition day 2019

Today is rare disease day: Although I say it should be called rare condition day instead.... As many of you know I was born with EB, but I’m not going to go in to detail about EB. But if you want to learn more about EB feel free to go to this link: https://debracanada.donorshops.com/ or you can go my blog also. https://butterfly-skin.blogspot.com/

If anyone is wondering why I say it should be called rare condition day this is why: Being born with something that makes you look different or walk or talk it does not make you contagious, so for that reason alone is why I say it should be called rare condition day not disease day as EB is not contagious.

Having EB does not make me rare. It makes me who I am. Being me is ok, or being your self is ok also. It does not matter what you have, it matters that you are you.

Yes I have EB I also have some talents. I can cook, crochet, knit, sew. I also help out at kinderschool @ Mark St, and St. B’s and I really enjoy it and love it. I appreciate being able to do all these things.

I myself have the pleasure of getting to learn something new last year. I had never heard about (FPIES) but I was able to meet a wonderful kid and family that have (FPIES) and the mom has a blog about (FPIES) so I encourage everyone to take this time and learn about (FPIES) or something new. Hear is the blog for every one that would like to learn more about (FPIES) https://fpiesworld.wordpress.com/

When you are born with something so unique you are able to help/teach everyone in the medical field and your friends and your family something new every day.

( It is ok to be you, that is who you are) !