Thank you to all the ALS advocates from across the country who are in Washington, D.C. and meeting with their Members of Congress on Captiol Hill this week. My family and I appreciate the time you have taken to travel to Washington and tell your stories, advocating for people living with ALS. We were planning to attend the Advocacy Day and Conference, we ended up rethinking our decision and this year we are not able to attend. We have however done our very best to spread awareness this month and every day of the year as well as send letters to our Members of Congress to tell our story and advocate for what we need to fight and end this disease. Here is our letter:
Today is the start of the 2014 National Amyotrophic Lateral Sclerosis (ALS) Advocacy Day and Public Policy Conference. My name is Jennifer Lange and I live in York, Pennsylvania. I am a registered voter as well as a Registered Nurse and a Social Worker; I am a mother of two children Sophia age 11 and Alex age 10 and a caregiver for my husband Bert Lange who has ALS. I am sure you receive many letters about all kinds of important topics that voters are advocating for and I realize that your calendars are probably packed full of important issues; however, as a voter I would like if you would take a minute to read my story, I promise I will keep it short and to the point.
My story is really like any other, my husband Bert who is 44 years old started to have difficulty walking one day, he described it as his legs feeling stiff, like they would stick when he walked. Over a year later that leg stiffness led us to a diagnosis of ALS or Lou Gehrig’s disease. I will not bore you with all the details of what led up to that diagnosis, what I want you to realize is this…
One day when you are sitting in a meeting you could feel a twitch in one of your arms, we all feel twitches from time to time right? You could start to have trouble with your pen when you write, or maybe your fingers may be giving you trouble when you type. You could start to trip as your walking to a meeting. You will probably think your age is starting to catch up with you or maybe you played tennis too hard last week, but these little nuisances won’t go away. You will do what everyone does, you will Google and all kinds of things will pop up, your eye will catch ALS, you may have never heard of it, or you may have an idea and you will start to read. Progressive, neurodegenerative affects nerve cells in the brain and spine, these nerve cells die, this causes all voluntary muscles to become paralyzed, and a person is unable to move, speak or breathe, death will follow. You will see that there is no medicine you can take; no cure for this disease, the life expectancy is 2-5 years. You will feel a rush of panic come over you, but your rational mind will tell you not to listen to Google, it must be something else, arthritis, or a pinched nerve.
You will go to your family doctor, they will nervously examine you, they may run some tests, they may say you should see a neurologist; this will probably take up to a year to rule out every possible cause for your symptoms. The panic will be real now, you will be praying for it to be anything but ALS, you will want cancer or MS, you will want a disease that maybe there is some type of treatment, some hope. When you finally enter that neurology office for the final diagnosis you may already know, but it will still seem unreal when they tell you it is ALS. This could be you. What would you do if it was you or your spouse, child, parent, or sibling?
I wanted to come to Washington and advocate in person, to tell you our story. I booked the hotel room, and paid the registration fee, I filled out a vacation slip at work and the educational trip forms were approved for my children to miss school. I wanted to meet you in person. But you see I have two children, and Bert and I made an agreement when we received this diagnosis, this disease would not take over our lives, and ALS would not take a front row seat. My son turned 10 yesterday, his birthday is important, we had balloons and a birthday breakfast. We had a basketball hoop waiting in the driveway when he got home from school, we had cake and pizza and we celebrated. My husband and I don’t want our son to remember his 10th birthday traveling to Washington to talk about ALS, we want him to remember jumping on the trampoline with his friends after eating cake and opening presents. It was a happy wonderful birthday. On Friday my children have a track meet at their school; it is a fun event that all the children are excited about. They prepared during gym class and anxiously waited to be chosen for an event, my son is running the one hundred yard dash, my daughter the four forty relay…they were ready to miss it; they were willing to come to Washington. My daughter wanted to talk to you and tell you what she wanted for her father. Bert and I did not want our children to miss the fun event at school, we wanted them to be at school with their friends, we will be in the stands cheering them on, and we will have lunch with them and see their smiles. I wanted to come to Washington, I think it is important to advocate for this disease, to bring awareness, to tell you that it could be you who receives the diagnosis and become paralyzed unable to breathe, with no treatment or cure. Bert held me to our agreement; our children come first, our family before ALS.
So, I write this letter hoping that you will read it and know that ALS can affect anyone. I hope you will hear my plea. I want the world to know what this disease is, I want people to be aware that it is out there and what it can do. I want you to take notice and see the importance of funding for research. I want you to see the importance of funding for the needs of people living with this disease, they need funding for equipment, medical care, nursing, therapies, and more. I want for you to know that it could happen to you or someone you love and I want you to make it a priority. I am sorry that I could not be in Washington to tell you this myself and introduce you to my husband and children, but my husband is right, we should not allow this disease to dictate how we live, it should not take priority over our children, our family. I appreciate all the ALS advocates out there that made sacrifices to attend the conference; I am grateful that they stormed the hill and told their stories. I hope you listen to them, I hope they make an impact on the decisions you make in Washington. I hope you never have to feel the panic that each and every person and family with ALS felt when they were going down that road of diagnosis. I wish for there to be a treatment and a cure found for this disease. If you have made it to the end of this letter, I want to thank you for your time and for reading it. I appreciate the work that you do; I realize it is not easy to address every issue out there. I am a proud American; I take my right to vote seriously. I hope that you take ALS Advocacy Day seriously and hear your voters who are living with ALS. Thank You.
Sincerely,
Jennifer E. Lange
BE STRONG FIGHT ON ~ Survivor
xoxo Jennifer
Today is the start of the 2014 National Amyotrophic Lateral Sclerosis (ALS) Advocacy Day and Public Policy Conference. My name is Jennifer Lange and I live in York, Pennsylvania. I am a registered voter as well as a Registered Nurse and a Social Worker; I am a mother of two children Sophia age 11 and Alex age 10 and a caregiver for my husband Bert Lange who has ALS. I am sure you receive many letters about all kinds of important topics that voters are advocating for and I realize that your calendars are probably packed full of important issues; however, as a voter I would like if you would take a minute to read my story, I promise I will keep it short and to the point.
My story is really like any other, my husband Bert who is 44 years old started to have difficulty walking one day, he described it as his legs feeling stiff, like they would stick when he walked. Over a year later that leg stiffness led us to a diagnosis of ALS or Lou Gehrig’s disease. I will not bore you with all the details of what led up to that diagnosis, what I want you to realize is this…
One day when you are sitting in a meeting you could feel a twitch in one of your arms, we all feel twitches from time to time right? You could start to have trouble with your pen when you write, or maybe your fingers may be giving you trouble when you type. You could start to trip as your walking to a meeting. You will probably think your age is starting to catch up with you or maybe you played tennis too hard last week, but these little nuisances won’t go away. You will do what everyone does, you will Google and all kinds of things will pop up, your eye will catch ALS, you may have never heard of it, or you may have an idea and you will start to read. Progressive, neurodegenerative affects nerve cells in the brain and spine, these nerve cells die, this causes all voluntary muscles to become paralyzed, and a person is unable to move, speak or breathe, death will follow. You will see that there is no medicine you can take; no cure for this disease, the life expectancy is 2-5 years. You will feel a rush of panic come over you, but your rational mind will tell you not to listen to Google, it must be something else, arthritis, or a pinched nerve.
You will go to your family doctor, they will nervously examine you, they may run some tests, they may say you should see a neurologist; this will probably take up to a year to rule out every possible cause for your symptoms. The panic will be real now, you will be praying for it to be anything but ALS, you will want cancer or MS, you will want a disease that maybe there is some type of treatment, some hope. When you finally enter that neurology office for the final diagnosis you may already know, but it will still seem unreal when they tell you it is ALS. This could be you. What would you do if it was you or your spouse, child, parent, or sibling?
I wanted to come to Washington and advocate in person, to tell you our story. I booked the hotel room, and paid the registration fee, I filled out a vacation slip at work and the educational trip forms were approved for my children to miss school. I wanted to meet you in person. But you see I have two children, and Bert and I made an agreement when we received this diagnosis, this disease would not take over our lives, and ALS would not take a front row seat. My son turned 10 yesterday, his birthday is important, we had balloons and a birthday breakfast. We had a basketball hoop waiting in the driveway when he got home from school, we had cake and pizza and we celebrated. My husband and I don’t want our son to remember his 10th birthday traveling to Washington to talk about ALS, we want him to remember jumping on the trampoline with his friends after eating cake and opening presents. It was a happy wonderful birthday. On Friday my children have a track meet at their school; it is a fun event that all the children are excited about. They prepared during gym class and anxiously waited to be chosen for an event, my son is running the one hundred yard dash, my daughter the four forty relay…they were ready to miss it; they were willing to come to Washington. My daughter wanted to talk to you and tell you what she wanted for her father. Bert and I did not want our children to miss the fun event at school, we wanted them to be at school with their friends, we will be in the stands cheering them on, and we will have lunch with them and see their smiles. I wanted to come to Washington, I think it is important to advocate for this disease, to bring awareness, to tell you that it could be you who receives the diagnosis and become paralyzed unable to breathe, with no treatment or cure. Bert held me to our agreement; our children come first, our family before ALS.
So, I write this letter hoping that you will read it and know that ALS can affect anyone. I hope you will hear my plea. I want the world to know what this disease is, I want people to be aware that it is out there and what it can do. I want you to take notice and see the importance of funding for research. I want you to see the importance of funding for the needs of people living with this disease, they need funding for equipment, medical care, nursing, therapies, and more. I want for you to know that it could happen to you or someone you love and I want you to make it a priority. I am sorry that I could not be in Washington to tell you this myself and introduce you to my husband and children, but my husband is right, we should not allow this disease to dictate how we live, it should not take priority over our children, our family. I appreciate all the ALS advocates out there that made sacrifices to attend the conference; I am grateful that they stormed the hill and told their stories. I hope you listen to them, I hope they make an impact on the decisions you make in Washington. I hope you never have to feel the panic that each and every person and family with ALS felt when they were going down that road of diagnosis. I wish for there to be a treatment and a cure found for this disease. If you have made it to the end of this letter, I want to thank you for your time and for reading it. I appreciate the work that you do; I realize it is not easy to address every issue out there. I am a proud American; I take my right to vote seriously. I hope that you take ALS Advocacy Day seriously and hear your voters who are living with ALS. Thank You.
Sincerely,
Jennifer E. Lange
BE STRONG FIGHT ON ~ Survivor
xoxo Jennifer
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