Lyme organizations for children

[adkmom]

Anyone know if there's any Lyme nonprofits, groups specifically geared towards children with Lyme?

 

I'm mulling over whether to launch a Children's Lyme Foundation... I know there are large groups, ILADS and such but there seems to be such a need to promote education and awareness specifically for children.

 

As we all know, we seem to face different challenges, questions, symptoms as moms of children with Lyme. It's always easier to generate awareness and anger to instigate change when children are at the forefront. It seems they've gotten forgotten, in a sense, with this disease. None of my peds offices ever "promoted" prevention of Lyme and we lived in endemic areas. Sorry...I'm in a fiesty, frustrated mood today...this is a long road. And we're only 3 months in!

 

darlene

[philamom]

Anyone know if there's any Lyme nonprofits, groups specifically geared towards children with Lyme?

 

I'm mulling over whether to launch a Children's Lyme Foundation... I know there are large groups, ILADS and such but there seems to be such a need to promote education and awareness specifically for children.

 

As we all know, we seem to face different challenges, questions, symptoms as moms of children with Lyme. It's always easier to generate awareness and anger to instigate change when children are at the forefront. It seems they've gotten forgotten, in a sense, with this disease. None of my peds offices ever "promoted" prevention of Lyme and we lived in endemic areas. Sorry...I'm in a fiesty, frustrated mood today...this is a long road. And we're only 3 months in!

 

darlene

How wonderful of you!

 

I've heard of LymeAid 4 Kids.

[adkmom]

Philmom,

 

Thanks for the info. Did your child present with cognitive/behavioral symptoms for Lyme? Starting to pitch articles for May..Lyme awareness month.

 

darlene

[kmom]

Fantastic idea! I feel like I have this urge to do something proactive too. Right now I put my energy into my own kids and helping others on the side through word of mouth or the forum. It takes time but rewarding. I have a 31 yr. old cousin who is basically incapacitated and every bone in my body tells me it was infectiously caused. His parents were in touch w/ our PANDAS neurologist last summer but not much was done b/c he's so far gone. So sad. If there was awareness back then, he could have had a shot of life and not hide from the world for 15 yrs. It's heartwrenching. Let me know what you find. Maybe I can help!

[adkmom]

Thanks Philmom. I've seen that. I guess they're under Lyme Disease Association and are responsible for providing aid to families.

 

Kmom - I'll pm you. Would welcome any help. (either in starting the foundation or in pitching articles) I think best chance of getting stories out is in May (with the awareness aspect).

 

Many thanks.

 

darlene

[philamom]

Philmom,

 

Thanks for the info. Did your child present with cognitive/behavioral symptoms for Lyme? Starting to pitch articles for May..Lyme awareness month.

 

darlene

behavioral