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Posts from the ‘Ichthyosis Fundraising’ Category

Why Donate to FIRST?

A fair and valid question. And, in fact, one of the most rewarding and exciting parts of the job, for the staff at FIRST, is to provide the answer. Likely you are already aware that donating to FIRST will ensure the continuation of the Research Grant Program, whereby the top investigators in the field of ichthyosis research will be supported in their pursuits to find better treatments and an eventual cure. However, as the global leaders in ichthyosis advocacy and research, it is not only our job to bring public attention to this rare condition and support the advancement of research, but to also embrace those living with ichthyosis today, and to help them live a rich, fulfilling, and healthy life. Your donations make this possible.Conf2014-TubBO-Melton-AS (5)

Did you know that one of the programs supported by your donation is our Regional Support Network (RSN)? The RSN offers numerous connection opportunities including regional meetings, family conferences, FIRST to Know conference calls, and access to an extensive network of ichthyosis experts. It is one of the many programs funded by individual donations, corporate appeals, fundraising events, United Way and CFC donations, and private grants. FIRST does not receive any governmental funding; it is solely funded by individual and private donations.

Perhaps you have even attended one of our events, been connected to a doctor or family in your region, or gained some insight about ichthyosis on a FIRST to Know conference call? If so, you may have a deeper understanding of the critical need for these types of personal connections, as well as the rare opportunity to build relationships with the top doctors in the field of ichthyosis. The RSN offers life-changing connections that may not occur in any other situation. Your donations make these connections possible.

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When asked about the importance of the RSN, and how it has changed the lives of so many, Program Director, Moureen Wenik, said,

“The ichthyosis community is a small and very close knit community. I have witnessed the relief people feel when they have someone to talk to who really understands what it is like to have a child with ichthyosis, or be an affected adult. It is great to talk to someone who ‘gets it’ and doesn’t have to explain ichthyosis. The RSN provides a safe place for families to connect, whether through social media, by telephone, or face-to-face at a meeting. Often they have never met another person who shares the disorder. The feelings of isolation for new moms, parents of children with ichthyosis, or affected teens or adults with ichthyosis, can be overwhelming. This support network gives people the opportunity to talk to others who have experience living with ichthyosis and to share their feelings with others who understand.” Your donations help improve the lives of those in the ichthyosis community.

The RSN is only one of the programs supported by your donations. We’ll be sharing even more amazing ways your support is making a difference.DSC03579

FIRST encourages you to take advantage of the many opportunities and resources available through our foundation. And, we thank you wholeheartedly for helping us to provide them for you, each and every day.

More information on the Regional Support Network.


Member with self-proclaimed “long legs not meant for running”, will run Aramco Houston Half Marathon for FIRST

 

It is always exciting at FIRST when new members are inspired in such a way that they immediately embrace our community, making the most of our services, resources, and opportunities to connect.  In June of 2013, we met Andrew and Heather Sanders for the first time, along with their son Ruairi, who is affected with epidermolytic ichthyosis (EI), at a regional support meeting in Dallas, Texas.  Ruari was just six months old.  In a little over one year’s time, they have made numerous connections within the FIRST community, providing support for others and enthusiasm for our advocacy efforts, in every possible way.  Today we are sharing the story of why Andrew, a man who self-reportedly does “not have legs for running,” will run 13.1 miles, to say thank you

Heather and I had decided we would try to run a marathon when we moved over to the United States. We had originally applied to do a full marathon in 2012, but our arrival to the states was delayed by a few months, so we decided to defer.  I ran the Houston half marathon in 2013, not long after Ruairi was born.  It was particularly hard to keep my training going on with little to no sleep in the early months!   Obviously, Heather couldn’t run in 2013, because it was only a couple of months after Ruairi was born. She did run her first marathon in 2014 and managed to beat my time! So, needless to say, I have extra motivation for 2015!

Sanders-webBut our story with FIRST began after Ruairi was born in 2012. We were obviously aware of the fact that his skin wasn’t as we’d expected.  It was very red in places, and sort of paper-like in others.  The doctors ran over a number of possible explanations, many of which were deeply concerning, and told us that he would be taken to Texas Children’s Hospital in downtown Houston.  Before he was taken by ambulance, one of the neonatologists mentioned the possibility of ichthyosis to us.

I was aware of ichthyosis, having seen a documentary back home in the UK about a family in England who had two daughters with harlequin ichthyosis.  When we googled the term ichthyosis, the image results primarily showed babies with harlequin, so we knew that Ruairi didn’t have that particular form of ichthyosis. But we were obviously still very worried about him.  Heather quite quickly found her way to both FIRST and the UK ichthyosis support networks and we have found them to be an amazing resource. Indeed Heather is very active in the Facebook community, both with friends whom we’ve met at FIRST conferences and with new members.  We had a great time at the FIRST Family Conference in Indianapolis this past summer. We met some amazing people and learned a great deal.

We were even motivated to organize a fundraiser day at the Houston Astros a few months ago, which we were more than pleased to do.  It’s really great that MLB teams do this for charities.  It brought some of the local families who are affected by ichthyosis together, while raising some awareness among those who came to the table and picked up a wristband or some literature.  Obviously, there is still a long way to go.  It was just only this weekend that I had some harmless but frustrating comments from strangers that Ruairi looked like he’d gotten too much sun.  My stock response is to tell them that he has a skin condition and, and no, I haven’t let my two year old get a second degree burn, although I tend to only think the latter part of that line!

In all honesty, I’m running the 2015 Houston Marathon, January 18, 2015, in hopes that I can raise some money to help 10151801_10152426926206153_735919315687901046_nsupport FIRST by way of thanks for the support they have given us.  I’m sure I can get some of my friends to sponsor me on the basis that a half marathon is a challenge for anybody, but particularly a former basketball player of 6’8″!  My long legs are not really made for running.

In the longer term, I’m sure like most people reading this, I really hope for a cure.  I’m confident that a good amount of research into genetic conditions is already happening and that people who deal with ichthyosis can benefit from scientific discoveries elsewhere.  Obviously this all comes down to money.  Perhaps the money I raise can also be put towards research.  But perhaps just raising a little awareness will also do some good! A donation link has been set up so you can join us in supporting FIRST, and making a difference.

-Andrew Sanders

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.