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Supporting Families with Koolen-de Vries Syndrome -

Supporting Families with Koolen-de Vries Syndrome. About Koolen-de Vries Syndrome. Meet the Kool kids. We are pleased to announce the formation of a Medical Advisory Board. Thank you to Dr. Koolen, Dr. de Vries and Dr. Mefford for joining our team! Additional details to follow! Are you signed up for the Supporting Families with Koolen-de Vries Syndrome newsletter? Sign up at the top of the page! Find past editions by clicking here. Sign up at the top of the page! Additional details to follow!

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Supporting Families with Koolen-de Vries Syndrome - | supportingkdvs.com Reviews

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Supporting Families with Koolen-de Vries Syndrome. About Koolen-de Vries Syndrome. Meet the Kool kids. We are pleased to announce the formation of a Medical Advisory Board. Thank you to Dr. Koolen, Dr. de Vries and Dr. Mefford for joining our team! Additional details to follow! Are you signed up for the Supporting Families with Koolen-de Vries Syndrome newsletter? Sign up at the top of the page! Find past editions by clicking here. Sign up at the top of the page! Additional details to follow!

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2 about us

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4 board of directors

5 what is kdvs

6 news

7 newsletters

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Supporting Families with Koolen-de Vries Syndrome - | supportingkdvs.com Reviews

https://supportingkdvs.com

Supporting Families with Koolen-de Vries Syndrome. About Koolen-de Vries Syndrome. Meet the Kool kids. We are pleased to announce the formation of a Medical Advisory Board. Thank you to Dr. Koolen, Dr. de Vries and Dr. Mefford for joining our team! Additional details to follow! Are you signed up for the Supporting Families with Koolen-de Vries Syndrome newsletter? Sign up at the top of the page! Find past editions by clicking here. Sign up at the top of the page! Additional details to follow!

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supportingkdvs.com

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Products – Supporting KDVS

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Kool People in the News. Showing all 10 results. Sort by average rating. Sort by price: low to high. Sort by price: high to low. KDVS Awareness Day Shirt. Ndash; $. Ndash; $. KdVS Awareness Day Mug. Koolen-de Vries Syndrome Bracelet. Kool Kid Magnet – International Shipping. KDVS Awareness Ribbon Shirt. 8220;I’m Too Kool” Shirt. Koolen-de Vries Syndrome Mug. Koolen-de Vries Syndrome Tote. Sign up for our Newsletter. Shop the Kool Store. KDVS Awareness Ribbon Shirt. Koolen-de Vries Syndrome Mug.

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Fundraising – Supporting KDVS

http://www.supportingkdvs.com/fundraising

Kool People in the News. Supporting Families with Koolen-de Vries Syndrome has now formed a Fundraising Committee. Our objective is to promote awareness and raising of funds by means of:. Do you have some great fundraising ideas? Are you in need of information or assistance about hosting an event? We are here to help in any way we can. Please use the form below to get in touch with our Fundraising Committee! If you are a human and are seeing this field, please leave it blank. Fields marked with an *.

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Donations – Supporting KDVS

http://www.supportingkdvs.com/donations

Kool People in the News. Thank you for considering a donation to Supporting Families with Koolen-de Vries Syndrome. The organization is run entirely by volunteers and all donations help us continue to support our mission:. To educate, increase awareness and promote research for the support and enrichment of individuals living with Koolen-de Vries Syndrome and their families. We are so thankful to have the support of the Koolen-de Vries Syndrome community. Donations can also be mailed to:. Simply click th...

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Support – Supporting KDVS

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Kool People in the News. Supporting Families with Koolen-de Vries Syndrome Non-Profit. Are you active on Facebook? Like Supporting Families with Koolen-de Vries Syndrome on Facebook to see notices of new newsletters, events, research, and more. The following support groups are not created or moderated by Supporting Families with Koolen-de Vries Syndrome. Views expressed in the groups do not necessarily reflect the views of SFKDVS. Koolen de Vries Syndrome 17q21.31 Microdeletion Syndrome Support Group.

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Volunteering – Supporting KDVS

http://www.supportingkdvs.com/volunteering

Kool People in the News. Are you interested in assisting Supporting Families with Koolen-de Vries Syndrome? A number of volunteering opportunities exist and we would love to help you find a way to get involved. One of our main missions is to spread awareness and YOU are a huge asset in helping to spread the word! Wear some KOOL gear, snap up a KdVS tote bag, talk to your friends, family, doctors, and community about Koolen-de Vries Syndrome and send them to www.supportingkdvs.org! The Social Outreach Com...

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peanutevamarie.blogspot.com

Peanut's Adventures: January 2015

http://peanutevamarie.blogspot.com/2015_01_01_archive.html

This is an online journal for Eva's Adventures - good ones and bad. Monday, January 19, 2015. What a great day. If I could change anything - well, it would be boots. Note to self: Eva and Elizabeth both need snow boots, not fashion boots. They are not waterproof. Good thing I am over loaded with precautionary extra items such as a full change of clothes for everyone. This for once came in handy. Sunday, January 11, 2015. A Cold VS. the Flu: What's the Difference? SYMPTOMS COMMON COLD FLU. Sources: FluVie...

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Peanut's Adventures: April 2014

http://peanutevamarie.blogspot.com/2014_04_01_archive.html

This is an online journal for Eva's Adventures - good ones and bad. Sunday, April 27, 2014. All I can say is Eva loved it - and rode all by herself. Sorry Mr. Wallet, I can see this in your near future. Friday, April 25, 2014. Easter came and went again this year with absolutely beautiful weather. When we were looking for our many candy filled plastic eggs, but Eva's attention span lasted through only about eight eggs and she was done. She really enjoyed the playset the best. Benign" refers to a conditio...

peanutevamarie.blogspot.com

Peanut's Adventures: December 2014

http://peanutevamarie.blogspot.com/2014_12_01_archive.html

This is an online journal for Eva's Adventures - good ones and bad. Wednesday, December 10, 2014. Busy schedule this week. After that, we called in an additional nurse to assist with inserting drops to dilate. We were then sent out to the waiting room for at least thirty minutes after which we were again called back into the patient's room. The lights were turned down low again and the doctor was covering her eyes, one by one, to see if her muscles responded to light differentiation.

peanutevamarie.blogspot.com

Peanut's Adventures: October 2014

http://peanutevamarie.blogspot.com/2014_10_01_archive.html

This is an online journal for Eva's Adventures - good ones and bad. Monday, October 6, 2014. I can't believe it has been three months since my last post. What a slacker. Well, I can not report much except that we had attended another awesome KDVS Gathering. I was horrible with no camera at all available so I had to rely on others for pictures. Luckily I was able to create a custom photo book through my KDVS Family support. Thank you all for that! Http:/ www.brownsburg.k12.in.us/.

peanutevamarie.blogspot.com

Peanut's Adventures: June 2014

http://peanutevamarie.blogspot.com/2014_06_01_archive.html

This is an online journal for Eva's Adventures - good ones and bad. Thursday, June 26, 2014. We had our appointment on Tuesday. Our second opinion came back at a negative. So as for now, Eva does not have melanoma. She will be seen every six months unless more markings appear. Biopsy results are benign! Monday, June 2, 2014. Dedication to our Oldest Cousin. If Eva could answer me this question - "what would be three things you want to do today? Eva had her procedure 11 days ago and it went smoothly. ...

peanutevamarie.blogspot.com

Peanut's Adventures: District Star

http://peanutevamarie.blogspot.com/2014/10/district-star.html

This is an online journal for Eva's Adventures - good ones and bad. Monday, October 6, 2014. I can't believe it has been three months since my last post. What a slacker. Well, I can not report much except that we had attended another awesome KDVS Gathering. I was horrible with no camera at all available so I had to rely on others for pictures. Luckily I was able to create a custom photo book through my KDVS Family support. Thank you all for that! Http:/ www.brownsburg.k12.in.us/.

peanutevamarie.blogspot.com

Peanut's Adventures: January 2014

http://peanutevamarie.blogspot.com/2014_01_01_archive.html

This is an online journal for Eva's Adventures - good ones and bad. Sunday, January 19, 2014. Sunday, January 5, 2014. Love at first snow. We played outside for at least two hours. So happy we skipped the nap - their so overrated on days like this anyway! Subscribe to: Posts (Atom). Supporting Families with Koolen de Vries Snydrome. Simple template. Template images by luoman.

peanutevamarie.blogspot.com

Peanut's Adventures: Post surgery update

http://peanutevamarie.blogspot.com/2014/06/post-surgery-update.html

This is an online journal for Eva's Adventures - good ones and bad. Monday, June 2, 2014. On May 22, Eva had her nevus removed. She had three, one on each leg around her knee and the third on the bottom of her foot. We got home and she was wanting to go outside and play. I did not let her go, I felt as though her legs and foot were still numb and I didn't want her to unknowingly hurt herself. She ate lunch like a bird and took a four hour nap. Subscribe to: Post Comments (Atom).

peanutevamarie.blogspot.com

Peanut's Adventures: May 2014

http://peanutevamarie.blogspot.com/2014_05_01_archive.html

This is an online journal for Eva's Adventures - good ones and bad. Wednesday, May 21, 2014. I have been giving words of encouragement to parents all over the world when it comes to getting all that you can for your child. I have been telling them that as KDVS parent, you are their voice. If you want something for your child, then fight for it. Now, unfortunately, I must admit, it is our turn. Subscribe to: Posts (Atom). Supporting Families with Koolen de Vries Snydrome.

peanutevamarie.blogspot.com

Peanut's Adventures: February 2014

http://peanutevamarie.blogspot.com/2014_02_01_archive.html

This is an online journal for Eva's Adventures - good ones and bad. Thursday, February 20, 2014. Focusing on coloring the cow. @ winery! She finally attached herself to my leg and I showed her that this puppy was ok, and soft, and happy, and. comforting her momentary sensory overload. We thanked our pet shop owner and headed downtown to our next vendor, the Winery. Friday, February 14, 2014. Not so) Terrific three's! Subscribe to: Posts (Atom). Supporting Families with Koolen de Vries Snydrome.

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Supporting Families with Koolen-de Vries Syndrome -

Supporting Families with Koolen-de Vries Syndrome. About Koolen-de Vries Syndrome. Meet the Kool kids. We are pleased to announce the formation of a Medical Advisory Board. Thank you to Dr. Koolen, Dr. de Vries and Dr. Mefford for joining our team! Additional details to follow! Are you signed up for the Supporting Families with Koolen-de Vries Syndrome newsletter? Sign up at the top of the page! Find past editions by clicking here. Sign up at the top of the page! Additional details to follow!

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