We are on a mission

H

holmfamily1992

New member
Hello to everyone!! Just a quick update and I will get to the important stuff!! We received our sons Fecal elactase test back and he doesnt need enzymes right now!!! YIPPY!! We started his Palmozyme treatments and his ACT's. Wow, we are up to early in the morning!! All his meds take about and 1 hour and 15 mins.

Anyway, As a family, we have set 5 goals.
1. Find a way to get a care center closer to us
2. Organize a Great Strides walk closer to us
3. Start a chapter in the Great lakes region
4. Get our area schools involved in the fight
5. Help to find a cure

Ironically, my sisters bosses wife is the marketing Director for the CF Foundation here in Michigan. She met with them on our behalf to find out how we can go about doing all these things.

We need to show the foundation that there is a need in Northern Michigan. As is shows right now there are only 3 people in Northern Michigan who have CF and I know that is not true. Just in my town alone there are at least 4. So eiher they are getting their care outside the state or not getting care at all. We have only 3 care centers in Michigan. All of which are down state. People in the UP either travel to Wisconsin or south for treatment.

We have to drive at least 3 hours away for his doctor appt. I know this may not seem far for some of you who may drive further but with gas prices what they are, getting a care center closer we help greatly!!

So what I need from anyone who may know of some one in Upper Michigan (UP) or Northern Michigan area, or even your own family, if you are interested in joining our crusade please let me know. In order for the CF Foundation to get involved we need to show that there is a need for the first three things on my to do list.

Thank you for any support or advice or help you can give.
Tina, Mother of 8
 
H

holmfamily1992

New member
Hello to everyone!! Just a quick update and I will get to the important stuff!! We received our sons Fecal elactase test back and he doesnt need enzymes right now!!! YIPPY!! We started his Palmozyme treatments and his ACT's. Wow, we are up to early in the morning!! All his meds take about and 1 hour and 15 mins.

Anyway, As a family, we have set 5 goals.
1. Find a way to get a care center closer to us
2. Organize a Great Strides walk closer to us
3. Start a chapter in the Great lakes region
4. Get our area schools involved in the fight
5. Help to find a cure

Ironically, my sisters bosses wife is the marketing Director for the CF Foundation here in Michigan. She met with them on our behalf to find out how we can go about doing all these things.

We need to show the foundation that there is a need in Northern Michigan. As is shows right now there are only 3 people in Northern Michigan who have CF and I know that is not true. Just in my town alone there are at least 4. So eiher they are getting their care outside the state or not getting care at all. We have only 3 care centers in Michigan. All of which are down state. People in the UP either travel to Wisconsin or south for treatment.

We have to drive at least 3 hours away for his doctor appt. I know this may not seem far for some of you who may drive further but with gas prices what they are, getting a care center closer we help greatly!!

So what I need from anyone who may know of some one in Upper Michigan (UP) or Northern Michigan area, or even your own family, if you are interested in joining our crusade please let me know. In order for the CF Foundation to get involved we need to show that there is a need for the first three things on my to do list.

Thank you for any support or advice or help you can give.
Tina, Mother of 8
 
H

holmfamily1992

New member
Hello to everyone!! Just a quick update and I will get to the important stuff!! We received our sons Fecal elactase test back and he doesnt need enzymes right now!!! YIPPY!! We started his Palmozyme treatments and his ACT's. Wow, we are up to early in the morning!! All his meds take about and 1 hour and 15 mins.

Anyway, As a family, we have set 5 goals.
1. Find a way to get a care center closer to us
2. Organize a Great Strides walk closer to us
3. Start a chapter in the Great lakes region
4. Get our area schools involved in the fight
5. Help to find a cure

Ironically, my sisters bosses wife is the marketing Director for the CF Foundation here in Michigan. She met with them on our behalf to find out how we can go about doing all these things.

We need to show the foundation that there is a need in Northern Michigan. As is shows right now there are only 3 people in Northern Michigan who have CF and I know that is not true. Just in my town alone there are at least 4. So eiher they are getting their care outside the state or not getting care at all. We have only 3 care centers in Michigan. All of which are down state. People in the UP either travel to Wisconsin or south for treatment.

We have to drive at least 3 hours away for his doctor appt. I know this may not seem far for some of you who may drive further but with gas prices what they are, getting a care center closer we help greatly!!

So what I need from anyone who may know of some one in Upper Michigan (UP) or Northern Michigan area, or even your own family, if you are interested in joining our crusade please let me know. In order for the CF Foundation to get involved we need to show that there is a need for the first three things on my to do list.

Thank you for any support or advice or help you can give.
Tina, Mother of 8
 
H

holmfamily1992

New member
Hello to everyone!! Just a quick update and I will get to the important stuff!! We received our sons Fecal elactase test back and he doesnt need enzymes right now!!! YIPPY!! We started his Palmozyme treatments and his ACT's. Wow, we are up to early in the morning!! All his meds take about and 1 hour and 15 mins.

Anyway, As a family, we have set 5 goals.
1. Find a way to get a care center closer to us
2. Organize a Great Strides walk closer to us
3. Start a chapter in the Great lakes region
4. Get our area schools involved in the fight
5. Help to find a cure

Ironically, my sisters bosses wife is the marketing Director for the CF Foundation here in Michigan. She met with them on our behalf to find out how we can go about doing all these things.

We need to show the foundation that there is a need in Northern Michigan. As is shows right now there are only 3 people in Northern Michigan who have CF and I know that is not true. Just in my town alone there are at least 4. So eiher they are getting their care outside the state or not getting care at all. We have only 3 care centers in Michigan. All of which are down state. People in the UP either travel to Wisconsin or south for treatment.

We have to drive at least 3 hours away for his doctor appt. I know this may not seem far for some of you who may drive further but with gas prices what they are, getting a care center closer we help greatly!!

So what I need from anyone who may know of some one in Upper Michigan (UP) or Northern Michigan area, or even your own family, if you are interested in joining our crusade please let me know. In order for the CF Foundation to get involved we need to show that there is a need for the first three things on my to do list.

Thank you for any support or advice or help you can give.
Tina, Mother of 8
 
H

holmfamily1992

New member
Hello to everyone!! Just a quick update and I will get to the important stuff!! We received our sons Fecal elactase test back and he doesnt need enzymes right now!!! YIPPY!! We started his Palmozyme treatments and his ACT's. Wow, we are up to early in the morning!! All his meds take about and 1 hour and 15 mins.
<br />
<br />Anyway, As a family, we have set 5 goals.
<br />1. Find a way to get a care center closer to us
<br />2. Organize a Great Strides walk closer to us
<br />3. Start a chapter in the Great lakes region
<br />4. Get our area schools involved in the fight
<br />5. Help to find a cure
<br />
<br />Ironically, my sisters bosses wife is the marketing Director for the CF Foundation here in Michigan. She met with them on our behalf to find out how we can go about doing all these things.
<br />
<br />We need to show the foundation that there is a need in Northern Michigan. As is shows right now there are only 3 people in Northern Michigan who have CF and I know that is not true. Just in my town alone there are at least 4. So eiher they are getting their care outside the state or not getting care at all. We have only 3 care centers in Michigan. All of which are down state. People in the UP either travel to Wisconsin or south for treatment.
<br />
<br />We have to drive at least 3 hours away for his doctor appt. I know this may not seem far for some of you who may drive further but with gas prices what they are, getting a care center closer we help greatly!!
<br />
<br />So what I need from anyone who may know of some one in Upper Michigan (UP) or Northern Michigan area, or even your own family, if you are interested in joining our crusade please let me know. In order for the CF Foundation to get involved we need to show that there is a need for the first three things on my to do list.
<br />
<br />Thank you for any support or advice or help you can give.
<br />Tina, Mother of 8
 
T

TonyaH

Guest
Hi Tina,

I am in North Carolina now, but moved here only a year ago. Until then, I had lived in Michigan my entire life. I lived in Lake Orion, which was near Rochester/Clarkston. We had both Children's and UofM within an hour and a half of us, so we were fortunate. But you are right. There is nothing in the UP!

Good for you for trying to get more involvement going up north. It is difficult when many patients see general pulmonologists. They would not find their way onto the national registry. And with a CF center so far away, I am sure many CF patients opt for the local pulmonologist. One of your best first steps may be spreading your idea through an ad campaign to find all of the CFers in your area of the state.

I just wanted to mention something I had read when I was in Michigan. I am not 100% about this, so you would have to look it up to verify, but I think I remember reading that you can deduct mileage on clinic visits on your taxes. We never did this when we lived there, but if you are driving three hours one way, then tracking all of your mileage to and from the hospital may be helpful to you at tax time.

Good luck, and please keep us posted on your progress!

PS...Are you near Mackinac? It is just gorgeous this time of year! My husband go up and spend three nights on the island every year for our anniversary. It has kind of become a tradition! We love love love the island!
 
T

TonyaH

Guest
Hi Tina,

I am in North Carolina now, but moved here only a year ago. Until then, I had lived in Michigan my entire life. I lived in Lake Orion, which was near Rochester/Clarkston. We had both Children's and UofM within an hour and a half of us, so we were fortunate. But you are right. There is nothing in the UP!

Good for you for trying to get more involvement going up north. It is difficult when many patients see general pulmonologists. They would not find their way onto the national registry. And with a CF center so far away, I am sure many CF patients opt for the local pulmonologist. One of your best first steps may be spreading your idea through an ad campaign to find all of the CFers in your area of the state.

I just wanted to mention something I had read when I was in Michigan. I am not 100% about this, so you would have to look it up to verify, but I think I remember reading that you can deduct mileage on clinic visits on your taxes. We never did this when we lived there, but if you are driving three hours one way, then tracking all of your mileage to and from the hospital may be helpful to you at tax time.

Good luck, and please keep us posted on your progress!

PS...Are you near Mackinac? It is just gorgeous this time of year! My husband go up and spend three nights on the island every year for our anniversary. It has kind of become a tradition! We love love love the island!
 
T

TonyaH

Guest
Hi Tina,

I am in North Carolina now, but moved here only a year ago. Until then, I had lived in Michigan my entire life. I lived in Lake Orion, which was near Rochester/Clarkston. We had both Children's and UofM within an hour and a half of us, so we were fortunate. But you are right. There is nothing in the UP!

Good for you for trying to get more involvement going up north. It is difficult when many patients see general pulmonologists. They would not find their way onto the national registry. And with a CF center so far away, I am sure many CF patients opt for the local pulmonologist. One of your best first steps may be spreading your idea through an ad campaign to find all of the CFers in your area of the state.

I just wanted to mention something I had read when I was in Michigan. I am not 100% about this, so you would have to look it up to verify, but I think I remember reading that you can deduct mileage on clinic visits on your taxes. We never did this when we lived there, but if you are driving three hours one way, then tracking all of your mileage to and from the hospital may be helpful to you at tax time.

Good luck, and please keep us posted on your progress!

PS...Are you near Mackinac? It is just gorgeous this time of year! My husband go up and spend three nights on the island every year for our anniversary. It has kind of become a tradition! We love love love the island!
 
T

TonyaH

Guest
Hi Tina,

I am in North Carolina now, but moved here only a year ago. Until then, I had lived in Michigan my entire life. I lived in Lake Orion, which was near Rochester/Clarkston. We had both Children's and UofM within an hour and a half of us, so we were fortunate. But you are right. There is nothing in the UP!

Good for you for trying to get more involvement going up north. It is difficult when many patients see general pulmonologists. They would not find their way onto the national registry. And with a CF center so far away, I am sure many CF patients opt for the local pulmonologist. One of your best first steps may be spreading your idea through an ad campaign to find all of the CFers in your area of the state.

I just wanted to mention something I had read when I was in Michigan. I am not 100% about this, so you would have to look it up to verify, but I think I remember reading that you can deduct mileage on clinic visits on your taxes. We never did this when we lived there, but if you are driving three hours one way, then tracking all of your mileage to and from the hospital may be helpful to you at tax time.

Good luck, and please keep us posted on your progress!

PS...Are you near Mackinac? It is just gorgeous this time of year! My husband go up and spend three nights on the island every year for our anniversary. It has kind of become a tradition! We love love love the island!
 
T

TonyaH

Guest
Hi Tina,
<br />
<br />I am in North Carolina now, but moved here only a year ago. Until then, I had lived in Michigan my entire life. I lived in Lake Orion, which was near Rochester/Clarkston. We had both Children's and UofM within an hour and a half of us, so we were fortunate. But you are right. There is nothing in the UP!
<br />
<br />Good for you for trying to get more involvement going up north. It is difficult when many patients see general pulmonologists. They would not find their way onto the national registry. And with a CF center so far away, I am sure many CF patients opt for the local pulmonologist. One of your best first steps may be spreading your idea through an ad campaign to find all of the CFers in your area of the state.
<br />
<br />I just wanted to mention something I had read when I was in Michigan. I am not 100% about this, so you would have to look it up to verify, but I think I remember reading that you can deduct mileage on clinic visits on your taxes. We never did this when we lived there, but if you are driving three hours one way, then tracking all of your mileage to and from the hospital may be helpful to you at tax time.
<br />
<br />Good luck, and please keep us posted on your progress!
<br />
<br />PS...Are you near Mackinac? It is just gorgeous this time of year! My husband go up and spend three nights on the island every year for our anniversary. It has kind of become a tradition! We love love love the island!
 
H

holmfamily1992

New member
Hi Tonya,

I didnt even think about people using pulmonologist as their doc's. But yes your right, people do. That might be a way to contact other CFers. I have contacted the editor for our major news paper to see if they would do a story about what we are doing. That would cover a lot of area.

We are about 1 and 1/2 hours from Machinaw. We live just south of Charlevoix. It is beautiful. We dont visit to often but when we do its great.

Thanks for you support,
Tina
 
H

holmfamily1992

New member
Hi Tonya,

I didnt even think about people using pulmonologist as their doc's. But yes your right, people do. That might be a way to contact other CFers. I have contacted the editor for our major news paper to see if they would do a story about what we are doing. That would cover a lot of area.

We are about 1 and 1/2 hours from Machinaw. We live just south of Charlevoix. It is beautiful. We dont visit to often but when we do its great.

Thanks for you support,
Tina
 
H

holmfamily1992

New member
Hi Tonya,

I didnt even think about people using pulmonologist as their doc's. But yes your right, people do. That might be a way to contact other CFers. I have contacted the editor for our major news paper to see if they would do a story about what we are doing. That would cover a lot of area.

We are about 1 and 1/2 hours from Machinaw. We live just south of Charlevoix. It is beautiful. We dont visit to often but when we do its great.

Thanks for you support,
Tina
 
H

holmfamily1992

New member
Hi Tonya,

I didnt even think about people using pulmonologist as their doc's. But yes your right, people do. That might be a way to contact other CFers. I have contacted the editor for our major news paper to see if they would do a story about what we are doing. That would cover a lot of area.

We are about 1 and 1/2 hours from Machinaw. We live just south of Charlevoix. It is beautiful. We dont visit to often but when we do its great.

Thanks for you support,
Tina
 
H

holmfamily1992

New member
Hi Tonya,
<br />
<br />I didnt even think about people using pulmonologist as their doc's. But yes your right, people do. That might be a way to contact other CFers. I have contacted the editor for our major news paper to see if they would do a story about what we are doing. That would cover a lot of area.
<br />
<br />We are about 1 and 1/2 hours from Machinaw. We live just south of Charlevoix. It is beautiful. We dont visit to often but when we do its great.
<br />
<br />Thanks for you support,
<br />Tina
 
R

rubyroselee

New member
Hi Tina,

I am also originally from Lake Orion, MI (and I know Tonya who previously wrote you) but now reside in Massachusetts. My family is originally from northern Michigan (Alpena) and we know there are very limited CF resources up there. I think it's great that you are trying to get more help for the CF community in that area because it's definitely needed! Good luck to you and hopefully you will be able to show the CFF that good care is needed because there are people with CF all over. It just stinks living in a more rural area because of the lack of resources sometimes. Hopefully your son is getting good care wherever he is currently going until something happens closer to home.
 
R

rubyroselee

New member
Hi Tina,

I am also originally from Lake Orion, MI (and I know Tonya who previously wrote you) but now reside in Massachusetts. My family is originally from northern Michigan (Alpena) and we know there are very limited CF resources up there. I think it's great that you are trying to get more help for the CF community in that area because it's definitely needed! Good luck to you and hopefully you will be able to show the CFF that good care is needed because there are people with CF all over. It just stinks living in a more rural area because of the lack of resources sometimes. Hopefully your son is getting good care wherever he is currently going until something happens closer to home.
 
R

rubyroselee

New member
Hi Tina,

I am also originally from Lake Orion, MI (and I know Tonya who previously wrote you) but now reside in Massachusetts. My family is originally from northern Michigan (Alpena) and we know there are very limited CF resources up there. I think it's great that you are trying to get more help for the CF community in that area because it's definitely needed! Good luck to you and hopefully you will be able to show the CFF that good care is needed because there are people with CF all over. It just stinks living in a more rural area because of the lack of resources sometimes. Hopefully your son is getting good care wherever he is currently going until something happens closer to home.
 
R

rubyroselee

New member
Hi Tina,

I am also originally from Lake Orion, MI (and I know Tonya who previously wrote you) but now reside in Massachusetts. My family is originally from northern Michigan (Alpena) and we know there are very limited CF resources up there. I think it's great that you are trying to get more help for the CF community in that area because it's definitely needed! Good luck to you and hopefully you will be able to show the CFF that good care is needed because there are people with CF all over. It just stinks living in a more rural area because of the lack of resources sometimes. Hopefully your son is getting good care wherever he is currently going until something happens closer to home.
 
R

rubyroselee

New member
Hi Tina,
<br />
<br />I am also originally from Lake Orion, MI (and I know Tonya who previously wrote you) but now reside in Massachusetts. My family is originally from northern Michigan (Alpena) and we know there are very limited CF resources up there. I think it's great that you are trying to get more help for the CF community in that area because it's definitely needed! Good luck to you and hopefully you will be able to show the CFF that good care is needed because there are people with CF all over. It just stinks living in a more rural area because of the lack of resources sometimes. Hopefully your son is getting good care wherever he is currently going until something happens closer to home.
 
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