In the United States today, we know of more than 6,000 rare or “orphan” diseases that each affect no more than 200,000 people. With so few people diagnosed, these disorders offer little financial incentive for pharmaceutical companies to study and develop treatments. The challenge of raising funds to advance science often falls to the families whose lives are impacted by a diagnosis that brings few answers.
In partnership with researchers though, families and friends can have a meaningful impact on the quest for better answers to help their loved ones. Our program in Baltimore, the Hunter Nelson Sturge-Weber Center, carries the name of a child whose family foundation is dedicated to raising money to fight the disorder that affected their son. Dollars raised by the families of other patients have been directly responsible for funding critically important clinical studies that would have been otherwise impossible. We have a long way to go, but I am deeply inspired by efforts like this one that Mitch and Jon are embarking upon. It will help us to raise awareness of Sturge-Weber Syndrome and push research forward at a more rapid pace.
I look forward to sharing more information about Sturge-Weber Syndrome in future posts.
Anne Comi MD
Director, Hunter Nelson Sturge-Weber Center
Kennedy Krieger Institute
http://sturgeweber.kennedykrieger.org/
Dream. Discover. Cure.
Thursday, February 19, 2009
Monday, February 2, 2009
Scheduling Headaches
So it's easy to take for granted planning a trip like this.
I assumed, very wrongly, that it wouldn't be too difficult to engineer a schedule that would minimize days off and make travelling from one game to the next not too many miles than is possible to drive in one day.
As I started to plan the journey, I ran into many problems. The plan has always been to start in Boston (and to end in Boston, but more on that later), so we set a date of June 21st as the day to start. That's one week before my 30th Birthday and if we do that and head south, we'd be in Atlanta when the Sox take on the Braves right around the 28th.
The most logical path to me was - Start in Boston and go south, down the east coast. Then curve westward after Florida, go up from Texas to Colorado, back down to Phoenix, then California. After hitting southern California, head north to hit San Fran, Oakland and Seattle, then a long drive to the midwest to hit the Twins, Brewers and Chicago. Then back to the northeast to finish in Boston.
BUT, that didn't work. If we followed that schedule, we would have been in Los Angeles with nothing to do and on games for 12 days.
So then I tried going the other way - starting in Boston, hitting the midwest and basically reversing the trek. Also a no-go.
Finally I figured it out: East coast, back up to Toronto, midwest, down to the south, out to Cali, then a looooooong drive across the country to finish in Philly and New York. And the reason that I realized we don't even have to finish in Boston is because our last scheduled game would be August 6th in New York - Yankees vs. Red Sox. If that's not a fitting way to end a trip like this, then I'm not sure what is.
So it seems like fate is sorta guiding our little trip. It's a 47 day journey covering over 10,000 miles - it's going to be epic.
We're still unsure how it's all going to work out, but if we're able to raise a bunch of money and not collapse from exhaustion at any point, then I'll consider it a complete success.
I assumed, very wrongly, that it wouldn't be too difficult to engineer a schedule that would minimize days off and make travelling from one game to the next not too many miles than is possible to drive in one day.
As I started to plan the journey, I ran into many problems. The plan has always been to start in Boston (and to end in Boston, but more on that later), so we set a date of June 21st as the day to start. That's one week before my 30th Birthday and if we do that and head south, we'd be in Atlanta when the Sox take on the Braves right around the 28th.
The most logical path to me was - Start in Boston and go south, down the east coast. Then curve westward after Florida, go up from Texas to Colorado, back down to Phoenix, then California. After hitting southern California, head north to hit San Fran, Oakland and Seattle, then a long drive to the midwest to hit the Twins, Brewers and Chicago. Then back to the northeast to finish in Boston.
BUT, that didn't work. If we followed that schedule, we would have been in Los Angeles with nothing to do and on games for 12 days.
So then I tried going the other way - starting in Boston, hitting the midwest and basically reversing the trek. Also a no-go.
Finally I figured it out: East coast, back up to Toronto, midwest, down to the south, out to Cali, then a looooooong drive across the country to finish in Philly and New York. And the reason that I realized we don't even have to finish in Boston is because our last scheduled game would be August 6th in New York - Yankees vs. Red Sox. If that's not a fitting way to end a trip like this, then I'm not sure what is.
So it seems like fate is sorta guiding our little trip. It's a 47 day journey covering over 10,000 miles - it's going to be epic.
We're still unsure how it's all going to work out, but if we're able to raise a bunch of money and not collapse from exhaustion at any point, then I'll consider it a complete success.
Monday, January 26, 2009
There are so many challenges to accompish our goal but....
I'm sitting here in my office having trouble getting my work done right now because I'm so excited that our trip is starting to take shape. One of our goals of this trip is to teach people that you shouldn't wait for someday to accomplish your dreams. Countless times in my life I have heard people say that someday they are going to this or that. Unfortunately for most, some day never comes as life always gets in the way. Then, at some point, the journey is over and someday never came. Heck I have been as guilty as anyone else when it comes to not accomplishing some dreams. However, I have also been blessed to have been able to do many things on my "Bucket List" before I was at the end of my lifes journey...but I still have more to do!
I believe that most people don't accomplish their dreams is because they never sit down and outline the design of that dream. Nothing happens without a plan. Until Lola came into our life with Sturge Weber, some of these dreams in my life became more important. Yes, Jon and I had been talking about a father/son trip since Jon was a teenager. Of course we were supposed to go to Red Sox Fantasy Camp. Instead, last summer I came up with this idea of going to all the ball parks. I believe I came up with this idea out from what is going on with Lola. Her disease is so scary because there are no real indications of when something could happen. When she had her first seizure, she went to her nap smiling and loving and woke up in went limp. It scared the heck out of us and we had thought she had stroked. It was the first time we realized that she REALLY had Sturge Weber. Prior to that we knew it, but she was moving along with no problems. It was just after her first birthday.
In the end, we never know when our time up is going to be. It could be this afternoon or it could be 40 years from now. Either way, it's important to live out your dreams or at least attempt to accomplish some of them. I believe that we are put on earth to help others and to create memories. I'm always telling my family that my job is to help you create memories that will last you a lifetime. I know that whenever I have a down moment or a tough day, I reach into the hard drive of my brain and pull up a memory of raising my boys, or playing in my band or marrying my wife. All of the sudden whatever was troubling me seems to not be as important and as gratifying as my memories. In the end, I won't remember the bad day, I will always remember my memories! If you get nothing out of what Jon and I are going to accomplish, take the time to look at your life and don't waste another second not living. You only get one shot at this life. Take your best shot!
I believe that most people don't accomplish their dreams is because they never sit down and outline the design of that dream. Nothing happens without a plan. Until Lola came into our life with Sturge Weber, some of these dreams in my life became more important. Yes, Jon and I had been talking about a father/son trip since Jon was a teenager. Of course we were supposed to go to Red Sox Fantasy Camp. Instead, last summer I came up with this idea of going to all the ball parks. I believe I came up with this idea out from what is going on with Lola. Her disease is so scary because there are no real indications of when something could happen. When she had her first seizure, she went to her nap smiling and loving and woke up in went limp. It scared the heck out of us and we had thought she had stroked. It was the first time we realized that she REALLY had Sturge Weber. Prior to that we knew it, but she was moving along with no problems. It was just after her first birthday.
In the end, we never know when our time up is going to be. It could be this afternoon or it could be 40 years from now. Either way, it's important to live out your dreams or at least attempt to accomplish some of them. I believe that we are put on earth to help others and to create memories. I'm always telling my family that my job is to help you create memories that will last you a lifetime. I know that whenever I have a down moment or a tough day, I reach into the hard drive of my brain and pull up a memory of raising my boys, or playing in my band or marrying my wife. All of the sudden whatever was troubling me seems to not be as important and as gratifying as my memories. In the end, I won't remember the bad day, I will always remember my memories! If you get nothing out of what Jon and I are going to accomplish, take the time to look at your life and don't waste another second not living. You only get one shot at this life. Take your best shot!
Tuesday, January 20, 2009
Sturge Weber and Baseball
Well here we are, in the process of planning my son Jon and my trip around the country to visit every baseball park this summer. It's a huge undertaking that is so exciting and hits on my two passions. Baseball has been in my blood since I was 6 years old, my first time I went to Fenway Park. I will never forget standing near the third base dugout and my cousin trying to catch foul balls in batting practice and trying to get Red Sox players to sign autographs. It drove me to wanting to be a baseball player my entire youth.
Sturge Weber didn't become a passion until my beautiful granddaughter was diagnosed with this disease 6 months after she was born. Sturge Weber is a tough disease that attacks the brain. I would say the most difficult part of this for our family is dealing with the fact of the unknown. We never know what is going to happen with Lola, our granddaughter. To date, we have been lucky. She has had two seizures and will be on anti-seizure medicine for the rest of her life. We have been truly blessed so far as we are in contact with so many families that have been hit very hard by this disease. In the end it can cause learning disabilites to death. As I said, the hard part is we never know. You can find out more about Sturge Weber by going to:
http://sturgeweber.kennedykrieger.org/
My son Jon and I have been huge Red Sox fans since Jon was very young. Of course I have always been a huge fan. This year, as we venture out from Fenway Park to every ballpark in the country, we are looking for support. Today is the beginning of our journey. It is truly a baseball journey with a father and a son as the main characters and a beautiful soon to be 3 year old granddaughter as our motivating mission. Along the way Jon and I will both be updating this blog to inform people on what is new and where we are going. Currently we are trying to get Major League Baseball on board to help us with tickets. We are also going to be looking for national sponsors to help raise money. Hopefully, with MLB's help, we will be able to raise even more money with an information booth at each ballpark. Shortly I will be placing a link onto this blog to inform our readers how to help us raise money. One of the hardships of this disease is it is considered an orphan disease. Basically this means that the drug companies don't see a large profit in treating this disease so therefore there is no research dollars. Sad but true.
If you have any questions or would like to help us in our efforts, please feel free to contact me at mitch@mitchrealty.com. I hope to hear from you as Jon and I start our journey!
Sincerely,
Mitch Ribak
Sturge Weber didn't become a passion until my beautiful granddaughter was diagnosed with this disease 6 months after she was born. Sturge Weber is a tough disease that attacks the brain. I would say the most difficult part of this for our family is dealing with the fact of the unknown. We never know what is going to happen with Lola, our granddaughter. To date, we have been lucky. She has had two seizures and will be on anti-seizure medicine for the rest of her life. We have been truly blessed so far as we are in contact with so many families that have been hit very hard by this disease. In the end it can cause learning disabilites to death. As I said, the hard part is we never know. You can find out more about Sturge Weber by going to:
http://sturgeweber.kennedykrieger.org/
My son Jon and I have been huge Red Sox fans since Jon was very young. Of course I have always been a huge fan. This year, as we venture out from Fenway Park to every ballpark in the country, we are looking for support. Today is the beginning of our journey. It is truly a baseball journey with a father and a son as the main characters and a beautiful soon to be 3 year old granddaughter as our motivating mission. Along the way Jon and I will both be updating this blog to inform people on what is new and where we are going. Currently we are trying to get Major League Baseball on board to help us with tickets. We are also going to be looking for national sponsors to help raise money. Hopefully, with MLB's help, we will be able to raise even more money with an information booth at each ballpark. Shortly I will be placing a link onto this blog to inform our readers how to help us raise money. One of the hardships of this disease is it is considered an orphan disease. Basically this means that the drug companies don't see a large profit in treating this disease so therefore there is no research dollars. Sad but true.
If you have any questions or would like to help us in our efforts, please feel free to contact me at mitch@mitchrealty.com. I hope to hear from you as Jon and I start our journey!
Sincerely,
Mitch Ribak
A Journey Begins...
When I was about 13 or 14 years old, my dad returned home from Red Sox Fantasy Camp. He had pictures of him wearing the white Sox uniform with the red numbers and he was standing with his brother, who was also in uniform. He played with ex-players like Bill Lee, Bob Stanley and Rico Petrocelli. My dad and I talked about going, and if I could have, I would have packed my bags right then. But the catch was a big one - especially for a 13 year old.
I wouldn't be able to go until I was 30 years old.
17 years is a long time, and that wait seemed insurmountable. But the prospect of going to Red Sox Fantasy Camp someday and playing with some of the players that I watched every night during the summer was such an incredible thing to look forward to. And over the years, that was something that always lived in the back of my mind. The approach to 30 years old, which to many is a depressing road, fraught with worry and stress, was exciting and something to look forward to. And as the day has grown closer, the goal has shifted a bit. Not due to a lack of desire to attend Fantasy Camp (which I still hope to do someday), but because of a new idea my dad had one day about 18 months ago.
Instead of an expensive, one-week trip to Fantasy Camp, how about using that money for a trip around the country, visiting every baseball stadium in a six-week period.
The undertaking is massive: Travelling over 10,000 miles total; seeing 30 baseball games in about 45 days; eating an indetermined number of hot dogs.
And it's all for a good cause. My stepneice was diagnosed with a very rare disease - Sturge-Weber Syndrome. Sturge-Weber is referred to as an "orphan disease" because its rarity offers little to no incentive to pharmaceutical companies to research cures or medicines. It is a neurological disease that can cause seizures and, in about 50% of cases, glaucoma. We saw this as an opportunity to also raise awareness and money for this cause, while undertaking an adventure that will hopefully inspire other fathers and sons to travel a similar path.
No matter what happens along our journey it is bound to be interesting. Both myself (Jon) and my dad (Mitch) will be posting here to keep people updated about what's going on. Starting immediately, I will begin posting about putting together our schedule and itinerary (as that's been quite a journey so far in and of itself) and I hope to post an account of every day of the trip.
Hello. Welcome to the journey.
I wouldn't be able to go until I was 30 years old.
17 years is a long time, and that wait seemed insurmountable. But the prospect of going to Red Sox Fantasy Camp someday and playing with some of the players that I watched every night during the summer was such an incredible thing to look forward to. And over the years, that was something that always lived in the back of my mind. The approach to 30 years old, which to many is a depressing road, fraught with worry and stress, was exciting and something to look forward to. And as the day has grown closer, the goal has shifted a bit. Not due to a lack of desire to attend Fantasy Camp (which I still hope to do someday), but because of a new idea my dad had one day about 18 months ago.
Instead of an expensive, one-week trip to Fantasy Camp, how about using that money for a trip around the country, visiting every baseball stadium in a six-week period.
The undertaking is massive: Travelling over 10,000 miles total; seeing 30 baseball games in about 45 days; eating an indetermined number of hot dogs.
And it's all for a good cause. My stepneice was diagnosed with a very rare disease - Sturge-Weber Syndrome. Sturge-Weber is referred to as an "orphan disease" because its rarity offers little to no incentive to pharmaceutical companies to research cures or medicines. It is a neurological disease that can cause seizures and, in about 50% of cases, glaucoma. We saw this as an opportunity to also raise awareness and money for this cause, while undertaking an adventure that will hopefully inspire other fathers and sons to travel a similar path.
No matter what happens along our journey it is bound to be interesting. Both myself (Jon) and my dad (Mitch) will be posting here to keep people updated about what's going on. Starting immediately, I will begin posting about putting together our schedule and itinerary (as that's been quite a journey so far in and of itself) and I hope to post an account of every day of the trip.
Hello. Welcome to the journey.
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