Day two opened with a session about Disabilities and different word choices. The words you choose and your reactions really do have an impact on people. Ashlyn has a medical condition, but that medical condition is not who she is, and ALL of us have some sort of medical condition. Which brings me to one of my soap boxes.
I attended a breakout session for just the women, which was primarily hijacked by a couple of mothers who wanted to discuss (in detail) their personal struggles. I didn't get as much out of it as I would have liked, except that a common frustration is the lack of compassion from others (and most often times, other family members). It is interesting that at the forefront of most people's concerns is whether or not the birthmark will be treated. I hope you will pause a minute and really think about that. Kyle and I and other members of our family have been asked what we will do with Ashlyn's birthmark, and quite frankly, it is no one's business. If we choose to discuss it with you, that is our choice, but it is not an appropriate question to ask. I wouldn't dare ask what you plan to do with your nose, ears, teeth, freckles, etc... For the record, our biggest concern with Ashlyn's birthmark is not cosmetic, but that PWSs darken and thicken with age. *End* :)
Saturday was jam packed with all of the Sturge-Weber experts. From Dermatology, Neurology, Ophthalmology and clinical research. The Neurologists were by far the rock stars of the conference; it is absolutely amazing what they have done in terms of discovering the cause of SWS. Both neurologists received a standing ovation and a very touching and heartfelt thank you from a father. It was stressed over and over and over how expensive the research process is and how critical private donors are to the research of rare diseases. The average cost of the testing process (4 phases) is $800 million. 3 out of 10 drugs earn more than the cost. <10% of drugs receive FDA approval (phase 4).
Big pharmas and biotechs focus their financial support towards research of therapies that will have the greatest impact, because that's the only way to be profitable. Considering the price tag, I can't say I disagree with them. There is new legislation that provides incentives for therapy development in support of rare diseases to hopefully spur an interest, but until the culture changes, private funds are critically important. We met a grandfather at the conference who raised $22,000 and gave the check directly to the lead SWS Neurologist. He apologized that it was not more, but Dr. Comi said that the money would allow her to keep her associate for another year. Sweet. There are two people working on this (sort of)... and if the funding stops, so does the research.
Soap box #2, PLEASE consider donating annually to a foundation that supports the research of rare diseases. Maybe even the Sturge-Weber Foundation :) Kyle and I want to make a difference and are thinking of an annual fundraiser coinciding with Ashlyn's birthday each year. We're not thinking anything extraordinary, but every $5 helps! Two little girls whose brother has SWS, presented a check for $105 to the Foundation from selling handmade soap. Such amazing kiddos. There is so much research yet to be done and, maybe more importantly, so much that can be done, but nothing is free. Every time I spend money now I wonder if I can do without and give that money to the SWF. Maybe I'll start a jar...
BUT A HUGE THANK YOU to everyone that has donated. We have raised over $3,400!!! INCREDIBLE! Thank you thank you thank you from the bottom of our hearts. You have made a difference :) *End*
Saturday night. :) I was told that I had to be at the conference's dinner/dance - which we were going to forego to ride horses, I have my priorities :). A good friend of mine from college submitted a song she wrote for consideration to be used as the SWF theme song. I suspected that hers had won (she's incredibly talented), and that was why they wanted me there. At the dinner it was announced she had won and I clapped and cheered, but they kept saying her name and looking at me. I didn't want to go on stage and accept anything for her... then I saw her walk on the stage. I think every single tear I had been holding back came out right then. The Foundation had flown Stephanie to Denver to surprise me (she now lives in Irvine). I cannot find the words to express how incredibly grateful I am. To feel the support of our families is amazing, and then to feel the support from your friends and even people you just met... incredible. It's like your standing in the cold and people just keep giving you blankets. Every layer is felt :)
I know Ashlyn, Kyle and I have an army behind us. Thank you from the bottom of our hearts.
Here is a link to "We Weren't Made to Go Alone" by Steph Shaw. It's perfect. Please listen and support.
https://itunes.apple.com/us/album/we-werent-made-to-go-alone/id353706905?i=353707056
Here is the video from the conference backed by Steph's vocals :) You will see some familiar faces!
SWF Conference Video
With love and gratitude,
Megan, Kyle & Ashlyn xoxo
I attended a breakout session for just the women, which was primarily hijacked by a couple of mothers who wanted to discuss (in detail) their personal struggles. I didn't get as much out of it as I would have liked, except that a common frustration is the lack of compassion from others (and most often times, other family members). It is interesting that at the forefront of most people's concerns is whether or not the birthmark will be treated. I hope you will pause a minute and really think about that. Kyle and I and other members of our family have been asked what we will do with Ashlyn's birthmark, and quite frankly, it is no one's business. If we choose to discuss it with you, that is our choice, but it is not an appropriate question to ask. I wouldn't dare ask what you plan to do with your nose, ears, teeth, freckles, etc... For the record, our biggest concern with Ashlyn's birthmark is not cosmetic, but that PWSs darken and thicken with age. *End* :)
Saturday was jam packed with all of the Sturge-Weber experts. From Dermatology, Neurology, Ophthalmology and clinical research. The Neurologists were by far the rock stars of the conference; it is absolutely amazing what they have done in terms of discovering the cause of SWS. Both neurologists received a standing ovation and a very touching and heartfelt thank you from a father. It was stressed over and over and over how expensive the research process is and how critical private donors are to the research of rare diseases. The average cost of the testing process (4 phases) is $800 million. 3 out of 10 drugs earn more than the cost. <10% of drugs receive FDA approval (phase 4).
Big pharmas and biotechs focus their financial support towards research of therapies that will have the greatest impact, because that's the only way to be profitable. Considering the price tag, I can't say I disagree with them. There is new legislation that provides incentives for therapy development in support of rare diseases to hopefully spur an interest, but until the culture changes, private funds are critically important. We met a grandfather at the conference who raised $22,000 and gave the check directly to the lead SWS Neurologist. He apologized that it was not more, but Dr. Comi said that the money would allow her to keep her associate for another year. Sweet. There are two people working on this (sort of)... and if the funding stops, so does the research.
Soap box #2, PLEASE consider donating annually to a foundation that supports the research of rare diseases. Maybe even the Sturge-Weber Foundation :) Kyle and I want to make a difference and are thinking of an annual fundraiser coinciding with Ashlyn's birthday each year. We're not thinking anything extraordinary, but every $5 helps! Two little girls whose brother has SWS, presented a check for $105 to the Foundation from selling handmade soap. Such amazing kiddos. There is so much research yet to be done and, maybe more importantly, so much that can be done, but nothing is free. Every time I spend money now I wonder if I can do without and give that money to the SWF. Maybe I'll start a jar...
BUT A HUGE THANK YOU to everyone that has donated. We have raised over $3,400!!! INCREDIBLE! Thank you thank you thank you from the bottom of our hearts. You have made a difference :) *End*
Saturday night. :) I was told that I had to be at the conference's dinner/dance - which we were going to forego to ride horses, I have my priorities :). A good friend of mine from college submitted a song she wrote for consideration to be used as the SWF theme song. I suspected that hers had won (she's incredibly talented), and that was why they wanted me there. At the dinner it was announced she had won and I clapped and cheered, but they kept saying her name and looking at me. I didn't want to go on stage and accept anything for her... then I saw her walk on the stage. I think every single tear I had been holding back came out right then. The Foundation had flown Stephanie to Denver to surprise me (she now lives in Irvine). I cannot find the words to express how incredibly grateful I am. To feel the support of our families is amazing, and then to feel the support from your friends and even people you just met... incredible. It's like your standing in the cold and people just keep giving you blankets. Every layer is felt :)
I know Ashlyn, Kyle and I have an army behind us. Thank you from the bottom of our hearts.
Here is a link to "We Weren't Made to Go Alone" by Steph Shaw. It's perfect. Please listen and support.
https://itunes.apple.com/us/album/we-werent-made-to-go-alone/id353706905?i=353707056
Here is the video from the conference backed by Steph's vocals :) You will see some familiar faces!
SWF Conference Video
With love and gratitude,
Megan, Kyle & Ashlyn xoxo
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