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Posts from the ‘Ichthyosis Fundraising’ Category

Different is Beautiful.

It was truly amazing to see the response from our members and followers to the TinySuperheroes T-shirt promotion, created in honor of their one year anniversary, and also in honor of their very first cape recipient, FIRST member Brenna Westlake.

“In just five days 75 t-shirts have been ordered! In my mind, a total of 100 for the month was the original estimate,” said an excited Robyn Rosenberger, founder of TinySuperheroes. “Luckily the t-shirts are print-on-demand, so bring it on!”

If you are a fan of our Facebook page, you’ve already seen the uplifting phrase splashed across the front of the shirt, “Be Super in the Skin You’re In, Different is Beautiful.” It is as simple as it is powerful, and is striking the most resounding chord with our audience.

In fact, it seems this message has satisfied a craving; a desire for the opportunity to project one’s own voFB6ice, speak one’s mind, and be a part of something that is inspiring such a profound change in perception. It got us thinking how important it is for people to feel like they are not helpless; that they themselves possess the deepest potential for transformation.

And although it has only been a few days, we have already witnessed the transformation ourselves. As these individual voices of courage join forces, together, they are becoming as strong as the most powerful of choirs. Different is Beautiful.

Purchase t-shirt here:
TinySuperheroes


Rainbows, a Symbol of Love, Hope…and Finding a Cure.

"Love was a feeling completely bound up with color, like thousands of rainbows superimposed, one on top of the other.” -Paul Coehlo

Until yesterday, whenever I saw a rainbow, there was no question what came to mind…

…ruby slippers.

However, yesterday, while listening to Chris Wassel Phelps-FriendsforFIRST-2013-1-WEBhere at the office, as she shared her experience at the Dane’s Friends for FIRST Concert, in Cupertino, CA, the iconic image of Judy Garland, Toto in hand, singing with a voice that is arguably unmatched, was replaced.

“The concert was the kind of community support that truly takes your breath away…and it was so moving when Eric Phelps told the story of its symbol,” Chris said pointing to the cover of the concert program.

Moments later, I learned that rainbows are far more important than inspiring the wish of finding “somewhere over.” Yesterday, I found out that at the end of a long bike excursion, while healing from the loss of his son Dane, ( a 3 year old boy affected with severe ichthysosis) – Eric Phelps, came upon a rainbow.  In his own words, here is Eric’s journey:

God’s Promises:

A few weeks after Dane passed, my friend encouraged me to ride the ‘The Tour of the California Alps’ in memory of Dane.  With the support of my wife, Suzanne, and our boy/girl twins, Cade and Chandler, I spent hours each week training for the event, most of the time thinking only about Dane.  In the afternoon of July, 11th, 2009, I climbed Carson Pass, the final mountain stage of the ride, again, thinking only about Dane.  I was blessed to have my family waiting for me at the top of Carson Pass.  We celebrated together; then a rainstorm came.  I rode back down the East side of Carson Pass in heavy rain to where the ride began about 15 miles away.  I again met up with my family, put my bike in the van, and we headed back towards Carson Pass on our way home.  On the side of the road in a meadow below Carson Pass, we saw a rainbow.  We stopped to take a picture but the only cameras we had were cheap flip phone cameras.  Then, a French cyclist (still on his bike), stopped to take a picture.  He miraculously was carrying an amazing camera in his cycling jersey.  He spoke great English.  I told him about Dane.  I gave him my email address and asked if he could email me a picture of the rainbow.  Sure enough, the following week, likely from somewhere in France, he emailed me this picture.  If you look closely you can see a 2nd rainbow above and the color from the main rainbow goes right into the trees on both sides.  Thank you to our anonymous photographer/friend.

Suzanne chose a rainbow as the logo for Dane’s Friends for FIRST.  It is a symbol of God’s promises. In seeing this picture (shown above), I am reminded that our family will, in time, see Dane again.

-Eric Phelps (Dane’s dad)

Dane Christian Phelps (Dec. 21st, 2004-June 25th, 2008)

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And now,  that rainbow has become a symbol of peace and hope for a community that reaches far beyond the region of Southern California. It is a community of friends, families, doctors, advocates, artists and all those who have embraced the message of young Dane: never lose hope for a cure.

It is with much love and gratitude that FIRST extends a warm thank you to all of the performers, attendees, doctors and volunteers at the FlintCenter in Cupertino for the unforgettable Dane’s Friends for FIRST Concert on September 7th.  We continue to be inspired, each day, by the eternal hope and joy of young Dane and the strength of the entire Phelps Family, and are privileged to consider them a part of ours.