Fundraiser For Mmma Patient

[LansingAreaCaregiver]

Anyone interested in forming a team to help out this patient? I'm in if I can find 4 more people. Respond on this thread or PM me if you're interested.

 

http://www.lansingstatejournal.com/apps/pbcs.dll/article?AID=2012303040088

 

EAST LANSING — Like any of us, Jenny Read has goals and dreams.The East Lansing woman would like to sign her own name clearly, for instance. She’d like to more easily care for her 6-year-old daughter, and not have such a tough time doing everyday chores like laundry.

 

But Read, 31, deals daily with the effects of mitochondrial cytopathy leukodystrophy. She was diagnosed with the rare syndrome – whose physical effects include severe tremors, migraines, muscle pain and nausea – at age 10.

 

Just 10 people in the world are known to have the disease, believes friend Becca Hollandsworth of Okemos. Read is a rarity in more than one respect — most do not survive past age 18.

 

Legally obtained medical marijuana products, including topical oils applied daily to ease the tremors, are one of the few things which do help. Seeing more doctors would help too, including the specialists expected to attend the seventh National Clinical Conference on Cannabis in Tucson, Ariz. in late April.

 

To raise the funds to get her there, a group of Read’s friends have organized “Jenny’s Rock ‘n’ Bowl”, set for 1 to 4:30 p.m. Saturday, March 10 at Spare Time Bowling Center, 3101 E. Grand River, Lansing.

 

Fifteen, five-person teams have already signed up, with room for three more. Registration cost of $15 per person covers bowling for the afternoon, pizza and pop. Prizes will be given out, and donated items will auctioned.

 

Organizers are also hoping enough funds will be raised to get Read more daily help.

 

Read said she first fell ill at age 5, and physicians could not determine the cause. “I couldn’t eat or drink,” she recalled. She remained in the hospital for six months.

 

Hollandsworth said doctors first believed Read had cerebral palsy. She was eventually correctly diagnosed in 1990 by Dr. Michael Nigro, a neurologist who still practicing in Farmington Hills.

 

Read has been in and out of hospitals and has had to submit to multiple biopsies. “It’s a very large guessing game,” Hollandsworth added. Hollandsworth said Read is a highly motivating speaker who has addressed gatherings in Mount Pleasant and Ann Arbor. “Every time (Jenny) speaks there is not a dry eye,” Hollandsworth said.

[+wolfgang]

bump

[restlesslegs]

Tell you what I am broke as broke, live on disability, can't bowl worth a tute, and don't know how to go about this but hey I do have a bit of bud she can have. I sure as heck hope someone can help her and I sure would if I had extra cash but I will help however I can.

 

bump