<![CDATA[Daniel's Den - Updates]]>Sun, 03 Nov 2024 19:29:23 -0600Weebly<![CDATA[Daniel is interviewed by Emanuelle MacIntosh about living with FOP]]>Wed, 26 Sep 2018 05:00:00 GMThttp://daniels-den.com/updates/daniel-is-interviewed-by-emanuelle-macintosh-about-living-with-fop
youtu.be/mMFeBrmaoik?si=ESePSUE5Oq5vv0vw
My dear friend from Belgium, Emanuelle MacIntosh featured Daniel in her Inspirational Stories Show on YouTube.
She is a phenomenal psychic medium who has helped my so much over the last few years. We enjoyed sharing our story and hope you enjoy!  
]]><![CDATA[Daniel is in a LifeNoggin Infographic about FOP]]>Mon, 24 Sep 2018 05:00:00 GMThttp://daniels-den.com/updates/daniel-is-in-a-lifenoggin-infographic-about-fop
Was so surprised to see Daniel featured in this infographic video!
]]><![CDATA[3 Peaks for Daniel!]]>Thu, 03 May 2018 19:54:40 GMThttp://daniels-den.com/updates/3-peaks-for-daniel
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Dr. Kaplan calls FOP the Mount Everest of human conditions that he is committed to climb til we reach the cure!
​In August 2018, Daniel's uncle Alexis Palmer will be climbing the three highest mountains in Scotland, England and Wales...all in 24 hours...to support #cureFOP and #FOPFriends! Please support Alexis so we can all climb this mountain together!

All the details of the campaign are at: https://www.justgiving.com/fundraising/3-peaks-for-daniel​
Supporting UK's FOP Friends: https://www.justgiving.com/fopfriends

​Thank you Uncle Alexis for raising funds and awareness to support Daniel and the FOP community! 
]]><![CDATA[ABC News 13 visits with Daniel!]]>Sat, 03 Mar 2018 06:00:00 GMThttp://daniels-den.com/updates/abc-news-13-visits-with-daniel
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]]><![CDATA[3rd Annual Rare Disease Day this Saturday!]]>Wed, 21 Feb 2018 04:44:15 GMThttp://daniels-den.com/updates/3rd-annual-rare-disease-day-this-saturdayPicture
I'll be hosting a booth for FOP at Houston's 3rd annual Rare Disease Day this Saturday, February 24th at the Health Museum (1515 Herman Drive) 9a-1p. Join us to visit with booths from over 30 rare disease organizations to raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. It is also meant to give our 'rare' people a day of hope that their condition deserves attention, awareness for earlier and more accurate diagnosis, and hopefully one day soon a cure. We're all praying for research, treatments, support, funding and compassion!

The Health Museum is partnering with us and it is FREE to enter the Biorhythm exhibition.

#ShowYourRare #cureFOP
International FOP Association (IFOPA) Daniel's Den


See you there!
Tiffanie
]]><![CDATA[Our School Rocks!]]>Sun, 18 Feb 2018 04:58:20 GMThttp://daniels-den.com/updates/our-school-rocksPicture
    So supermom Courtney Lawhon Robertson decides to create an impromptu fundraiser for our fifth grade class to raise money for FOP research and the International FOP Association (IFOPA).

    In short order she mobilizes a team of the most amazing mothers and enthusiastic kids with flyers, posters, cheers and chants at carpool!!

    In one day, the Believe in a Cure carpool fundraiser raised over $4,000 from our generous friends at St. Francis!!!! A HUGE thank you to everyone who helped and contributed!!!

    To say that we're blown away is an understatement. There's nothing as special as seeing your child receive such care, compassion and encouragement from his friends and teachers. We are grateful beyond words! We Believe in a Cure!! THANK YOU EVERYONE!

    Daniel's Den #cureFOP St. Francis Episcopal School 
]]><![CDATA[Sweet Success!]]>Sat, 17 Feb 2018 03:34:08 GMThttp://daniels-den.com/updates/sweet-successPicture
The Bee-lieve in a Cure Honey has literally flown off the shelves! Thank you to everyone who got a few honey hearts to support Daniel and the IFOPA! Together, we raised over $6,000 to support research and take one step closer to a cure. Look for us again next Valentine's Day...we'll be back with more delicious, raw, local honey for your sweethearts!

We've been overwhelmed with the enthusiasm and generosity from our friends. Thank you everyone who helped...it really means so much to us to be surrounded by so much love. You guys are simply the sweetest!

Thank you to PICNIC, Pinkerton's Barbecue and Revolucion Coffee + Juice for helping us out.
]]><![CDATA[Bee-lieve in a Cure Honey now available!]]>Fri, 09 Feb 2018 04:32:28 GMThttp://daniels-den.com/updates/bee-lieve-in-a-cure-honey-now-availablePicture
Need a little something special for your Valentine?!

Bee-lieve in a Cure Honey is now available for sale to benefit International FOP Association (IFOPA)'s research for treatments and a cure for FOP. 

Please 'bee' an angel for Daniel and pick up a few bottles (or a case of 12!) for all your friends, teachers, co-workers to let them know how special they are!

This is small batch, raw, unfiltered, DELICIOUS, honey from the Houston area. It's harvested with love by Shelley, the Bee Lady.

These adorable 3.5oz jars are $10 each and quantities are limited.
Available now:
  • PICNIC (1928 Bissonnet Houston, TX 77005) www.picnicboxlunches.com 
    Monday-Friday 10a-5p / Saturday 10a-4p / Sunday closed
  • Pinkerton's Barbecue (1504 Airline Drive, Houston 77009) www.pinkertonsbarbeque.com 
  • Revolucion Coffee + Juice (1231 W 11th St. Houston, 77008) www.revolucionhtx.com
  • By contacting Tiffanie via email. 

Or donations will be gladly accepted at Daniel's Den fundraising page.


]]><![CDATA[2017 FOP Family Gathering]]>Mon, 11 Dec 2017 00:59:37 GMThttp://daniels-den.com/updates/2017-fop-family-gatheringPicture
Our family had a great weekend at the 2017 Family Gathering in San Francisco. Thank you to everyone at the IFOPA for putting together such a remarkable event.

FOP is a hard condition to live with, but being a part of this community of positive people, dedicated scientists and doctors, and generous supporters is incredibly heartwarming.

We were so impressed with the conference, staff and facility. We truly did connect, learn and grow. And most importantly, Daniel made new friends with other kids who get it, because they are living with FOP, too!
]]><![CDATA[Rare Disease Day 2017]]>Sun, 26 Feb 2017 00:45:25 GMThttp://daniels-den.com/updates/rare-disease-day-2017Picture
Had a great day hosting a booth for International FOP Association for Rare Disease Day. Met some brilliant researchers, med students, doctors, and other families living with a rare disease...all working together for support, advocacy, awareness, treatments and cures!!

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A huge thank you to Susan Fernbach, Director of Genetic Outreach for Baylor College of Medicine for organizing today's event!

Rare Disease Day is coming up on Feb 28th where millions of patients and their families around the world share their stories to promote awareness of the challenges, hopes and needs of those living with rare diseases. While each disorder may only affect a few, collectively they affect 10% of the population!!
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Daniel's condition is FOP. Go to www.daniels-den.com or www.ifopa.org for more information. Thank you!!

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