It's a Fundraiser!!!

A big thank you to my wonderful friend and neighbor Michelle for this! Michelle is a Sr. Director with the direct sales company Thirty-one. This is an AMAZING company based on the Proverbs 31 woman and they sell amazing product! They are also a company that likes to give back and that is exactly what Michelle is doing. I can't thank her enough! Details on the fundraiser as well as contact info for Michelle are below. Please share this info with everyone that you know! Thanks so much and happy shopping!!

World Arthritis Day

Today, October 12th 2011 is World Arthritis Day. A day to bring awareness to a disease affecting nearly 50 million Americans and 300,000 children. That's just in America! I really would like a WORLD number affected. We ask for just one day, one day out of 365 that the world hear and learn about this disease. Not a month, a day. One day to wear blue, light up blue and talk, out loud, in public about ARTHRITIS. It is almost as though people are ashamed. Arthritis doesn't get the same glamour as some other diseases. I just don't understand this. Not that other diseases aren't worthy of the attention and awareness, but really. In the month of October, try going anywhere without seeing the color pink. A few months ago it was another disease asking the world to go blue, and the world did. And who doesn't recognize the awareness color of yellow and what that represents. All of these diseases are deserving of attention. I repeat, ALL OF THEM. Including ARTHRITIS. Maybe, just maybe, one day my daughter's disease will get the attention it needs. Or better yet, a cure will be found and we can make this all a distant memory.
She asked me this morning, "Why is today World Arthritis Day?". So that people will know, so that maybe they will learn and understand.

2011 Charlotte NC Jingle Bell Run/Walk For Arthritis

A few months back, I got an email from our local Arthritis Foundation office asking me if Jenna would like to be the Youth Honoree for the 2011 Charlotte Jingle Bell Walk/Run for Arthritis. WOW! I felt so honored that they thought of my girl. What an amazing opportunity for us to do what we are so passionate about, raising awareness that kids get arthritis too. At first Jenna was not thrilled about this. She is a very shy, introverted child. She does not like any attention drawn to her. At the JA Conference she seemed to gain a bit more acceptance and understanding of the disease. Somewhere along the way she has also gained some sort of self assurance, some confidence maybe? She is apparently performing songs and dance in her kids class at church. She is very excited about a concert at school in which she hopes to be chosen to play an instrument. She has also gotten excited about being the Youth Honoree for the Jingle Bell Walk/Run. :o) If you would like to donate, join our team or form one of your own, you may do so at charlottejinglebellrun.kintera.org

Let's Move Together Arthritis Walk, Charlotte NC

This past Saturday, May 14th, we walked to show our support of not only our Jenna Bean, but the 50 million Americans, which includes 300,000 children that suffer everyday from this horrible, painful, debilitating, mystifying disease. I was worried that we would not hit our fundraising goal of $1000. It was right down to the wire but we surpassed it! We had a team member goal of 15, had 11, walked with 5. I decided that day that if need be, I will walk alone. If need be, I will be the only one donating. If I can only raise $10 and walk alone I would still do it. Wouldn't you??

Ears. PT. 504

One thing at a time, let's start with her ears. Wednesday of this week we saw the ENT to see if we could get to the bottom of her chronic ear infections. Basically one really long infection since February. She just finished her 4th round of antibiotics today. He confirmed what we already knew, that she has a build up of fluid in her ears. He suspected, as we did too, that her adenoids were enlarged making it impossible for anything to drain. She has had this nasty junky cough and snotty nose since last Fall, I guess that's all part of it. So he did an xray to check it out and sure enough they are enlarged. He also said that she has "significant hearing loss" which was surprising since we thought her hearing had come back! I was so shocked that I forgot to ask if this is permanent? Anyway, the game plan is to TRY to shrink the adenoids with nasal spray over the next 30 days and then we can avoid surgery. I'm all for it but I have my doubts. I suspect that in a matter of days, after finishing the antibiotic, the infection will return, as it has since February. Last week we were told by her Rheumatologist to hold her MTX. I am waiting on a call back as to whether or not we are to hold tonights MTX and Humira or give it. Also, if she does need to adenoidectomy and tubes inserted into her ears, do we stop then too? For how long? Over the last couple of days we have noticed a HUGE change in Jenna. Her energy level and attitude are incredible. I guess the MTX takes a larger toll on her than we realized! It's nice to see this side of her again. But, as my husband pointed out, this also means that she may be in for some serious pain. Time will tell. I want to emphasize her that it is the meds that control and treat her JIA and Uveitis that have made it impossible for her to fight off these infections. She is at risk and will suffer with any decision we make, whatever the outcome, she suffers in one way or another.


Now, onto PT. We have met with the PT only twice now and have been left to work on things ourselves at home otherwise. Each time we have met with him I feel as though he isn't listening? Or doesn't "get it"? Not sure, but something felt off. Jenna has been struggling with just basic leg lifts, particularly on her left side. This does not mean that she complains or tries to avoid doing them. On the contrary, she loves to. I pointed out to him that she was struggling, he suggested that maybe she isn't trying. Way to get my hackles up Dude. He tried giving her some different options for exercises and stretches, but she wasn't able to coordinate her body properly. It was getting frustrating. So, after talking to my amazing group of Moms I was referred to and contacted a local PEDIATRIC PT...DUH! Will we ever learn?? I am sure this other guy is great with his adult patients, just not my kid. I called this woman that specializes in peds and I loved speaking with her! I know this will be great. She addressed all of my concerns and I agreed 100% with everything she told me. We meet with her next Saturday!! Can't wait!

Last but certainly not least, the dreaded 504. Have you been following along? we have been trying to get this done since last year. Yep, last year. Just search 504 up at the top of the page, it will pull it all up. ;o) To sum it up for you, her school didn't feel she needed one nor was she entitled to one. I let it go for a bit and was stewing on it. Then after speaking with the folks at the Arthritis Foundation, I was urged to push on for it and they would be right there with me. I love them!! So I emailed Jenna's teacher to give her the heads up of what we were prepared to do if they wouldn't comply, suddenly, they were eager and willing. We went from them not even wanting a letter from an AF rep or any pamphlets or handouts on her diseases and meds to wanting to MEET with a rep in the hopes of learning more. HUH?! Oh well, whatever, let's go! So, Larry and I, along with an AF rep met with the Principal, teacher and school nurse. Someone....was noticeably absent! The guidance counselor. I don't know if that was intentional with the scheduling but it certainly worked in our favor. The entire mood of this meeting was completely different! I still don't think that they agree with a 504 for a 1st grader. They seem to think her medical action plan is sufficient, but we felt much more support and understanding from them and for that I am thankful. If anything new comes up between now and the end of the year we will meet again, otherwise  we will meet again right before school starts up again in August.

And in other news...

Jenna is still battling ear infections and is on her 4th course of antibiotics within an 8 week time frame. Yeah, that's just awesome. She no sooner comes off of them, she's back on. This time she didn't even have a fever, just complained of pain in her ears and she was deaf, again. So I really didn't even think they were infected. I thought maybe there was just too much fluid. I called her rheums office at Duke to run it all by them and see what they would want for if she did go to the ped. They are so awesome with communication that even on a "bad, crazy day in the office" in their words, they STILL called me back within a matter of a couple hours. The rheum said that 1) whether her ears are infected or not, it's time to call in an ENT to take a look. :(  2) Skip her MTX this Friday for SURE and possibly hold MTX and Humira next Friday. We'll wait and see what the ENT says about what's going on when we see him Wednesday next week and then call Duke. The rheums said that given how long she has been on MTX (Sept.08) and Humira ( Dec.09) she SHOULD be okay skipping these doses. Not entirely reassuring but I know we have no choice. Her ped said that the ENT will LIKELY suggest tubes. Not a big deal, right? Lots of kids have them, lots of kids have had many. Well not MY kid! Sure, it could be worse. Sure, I'm thankful it's not. But that doesn't always make the current struggle any easier. I read something this morning, "Without struggle, there is no progress.". I liked it, pretty profound.

When Jenna was last seen at Duke, just last month. Seems much longer ago! Anyway, we were given a script for PT for her. FINALLY. I really didn't know what to expect, I just wanted her to get some relief from the constant pain and fatigue.  I found a place here in town that looked great and they said they could help her. At her 1st appointment we learned some new things, ALWAYS learning with this disease. Her hamstrings are SUPER tight! He thinks that this is what is causing her pain behind the knee. Also, she has significant weakness in her hips and upper legs. I had no clue. We thought she was strong. Her hamstrings are so tight that she struggled just getting into some of the positions to stretch. Her hip muscles so weak that she needs to contort her body to lift her leg. WOW. We went home with some "homework" and had our 3 week follow up this week. I'm not overly impressed. For one thing, Jenna is 7, not 77. So if you for the most part treat 77 yr olds, are you REALLY going to know how to handle a 7 yr old?? I don't know, things didn't feel right at this appointment. Jenna had really struggled over the last 3 weeks with these exercises and she didn't make any progress. When I told him this, he said that with kids it's tough to tell because maybe they just aren't trying. DUDE, wrong thing to say. I tried telling him how much the leg lifts hurt her hips, especially the left hip which we noticed is weaker. He kept mentioning the exercises hurting her behind her knee. HELLO?? Is this thing on? Her HIP, they hurt her HIP. Ugh, I don't know. I just had that "feeling", ya know? So I put it all out there to my AWESOME group of JA Moms on Facebook!! LOVE those ladies! They told me that she for sure needs a ped specific PT, I really should have known this. Also, they told me that I did the right thing by listening to my gut. It hasn't failed me yet. So, one of the Moms I just met and she's local AND she gave me the name and number of the ped PT that her daughter used AND she is right here in town! Trouble is she is out from knee surgery but all good things come to those who wait. :)

Okay, ONE last tidbit. Remember WAY back last Fall when I posted about requesting a 504 plan for Jenna at school? Remember the troubles we faced with that? Would you believe....we are STILL struggling to get this? Yep, still struggling. I had decided to let it ride and try again next year. After speaking with the folks at our local AF as well as some FIERCE JA Moms I was encouraged to pursue it. Things are moving along. I hate that I needed to make threats to get things moving, but they are none the less moving. Without the Arthritis Foundation....NONE of this would be possible. I told them in no uncertain terms that I can't do this without them! And you know what? They've got our backs. How...cool...is....THAT?

Another "ARTHRITIS CHARITY AUCTION"!

We have three items up for bid on Ebay!! My husband was recently helping our neighbor move and they came across two vintage camcorders and one vintage instant camera. Our neighbor knew that we were raising funds for the Arthritis Foundation and he told us to take them and see what we could get for them. Unfortunately one of the camcorders seems to not be in working order but it's still a really cool piece and who knows? Maybe YOU know how to fix it! Our last "ARTHRITIS CHARITY AUCTION" netted us $75 that we were able to donate. We are hopeful that these vintage finds can bring in a hefty donation. Think of the photographer in your family, think of that collector that you know, and then dig deep. Here are the links:
Continental Colorshot 2000

Sankyo Sound XL-220 Super 8

Minolta Camcorder

Here is the why for all this: (facts from the AF)
*Nearly 300,00 children under age 17 are affected by juvenile arthritis
*JRA, affecting more than 50,000 children, is the most common form of juvenile arthritis and one of the most common childhood diseases in the United States.
* Arthritis and related diseases, such as JA, cost the U.S. economy nearly $128 BILLION annually in medical care and indirect expenses.

Common Symptoms of JA:
*PAIN, swelling, tenderness and stiffness of joints, causing limited range of motion.
*JOINT CONTRACTURE, which results from holding a painful joint in a flexed position for an extended period.
*DAMAGE to joint cartilage and bone leading to JOINT DEFORMITY and IMPAIRED USE of that joint.
*ALTERED GROWTH of bone and joints.

Did you know:
*The Arthritis Foundation has granted $380 MILLION to research across the country since 1948.
* Over the past 10 years the AF has funded over $3.2 MILLION in the Carolinas. Including but not limited to, aquatics programs, tai chi programs, Kids Rheum which is an INCREDIBLE support system!
* It costs the AF $1200 to send a family to the Juvenile Arthritis Conference.

"ARTHRITIS CHARITY AUCTION"

C'mon, you know you want in! Simply getting folks to shell out cash, even $10, is proving to be nearly impossible. So, we are having to get creative. I have been trying to get people to buy some Scentsy (link is in the side bar to your right) so that I can donate 100% of my commission from the party, sadly only 2 people have ordered, so, so far I can donate about $3 from that. We are trying to pull together a car wash/yard sale with a lemonade/cookie stand in the next few weeks as well.
And here is the latest, a Dell laptop up for bid on Ebay through Monday!! This was our 1st ever Dell laptop and it still runs GREAT! Anyone that knows us, knows that we take care of our things. Don't miss out!!

Where do I start???

It's all good news, I just don't know where to start! I feel so behind. Okay so we'll start with lab results. This is something that I had been very worried about, given the fact that she has not had proper labs done in over a year. They....looked.....GREAT! Sedimentation rate is WELL within normal range, WOW. Platelet count is only SLIGHTLY elevated, not a huge concern. The only other thing out of whack was her Alkaline Phosphatase. The rheum nurse explained that in kids it can be high simply based on the fact that they are generating a lot of bone. I'll take it. So, her body seems to be tolerating all the meds AND there apparently is no hidden inflammation. SO, why does she still feel so miserable??
Well, on Thursday she had her first PT session. She seemed to be feeling pretty good that day so I was sure he would think we were nuts for bringing her. Plus she was in one of her, "NO nothing hurts now or ever" moods. *SIGH* But as he was talking to her and checking her out, he was able to somehow by poking around on the back of her knees, reproduce the pain she feels and she admitted that YES, that's it. She then fessed up to her feet bothering her by days end by but that was ALL she was willing to own up to. One of the things he had her try was to stand on one foot and bend down to touch the floor and then stand back up. Most kids SHOULD be able to do this with only slight wobbling. She fell over. Partly goofing off, partly that her muscles are weak. He also pointed out that she has flat feet, virtually NO arch. We had been buying her Keds because she said they were soft and comfortable on her feet. She has always been so picky with shoes. He said they were all wrong for her feet and therefore contributing to her pain. AWESOME. He referred us to a specialty shoe store to have them properly fit her for a well constructed sneaker that would provide good stability. They guy at the store was awesome and we got her some GREAT sneakers! Never heard of the brand, "Brooks", but we will for sure be back for more when she outgrows these! Okay so back to PT. He also discovered that her hamstrings are super tight! She can't straighten her legs except when standing. With all of her hypermobility, her hamstrings are tight?? She couldn't even get into a proper position to stretch them. This will take some work. So we came home with a sheet of exercises to strengthen her hips, thighs and knees as well as stretches to loosen up her hamstrings AND instructions to get her shoes (which we did Saturday). He said he wanted to wait three weeks before seeing her again to see how much progress she could make with better shoes and doing her homework. The exercises are tough on her and the stretches painful but she HAS to do them and we HAVE to make her.
Then on Friday morning I went down to Charlotte to the Arthritis Foundation offices to meet with the person in charge of the Let's Move Together Walk. Our team is not doing so well with getting new members OR most especially with raising any money. This has had me really bugged and I thought for sure I was missing something. I had a GREAT time meeting with Stefani! I left there with some fresh ideas and some fresh energy! I am definitely feeling more positive. It's just going to take some creative thinking. While discussing different possibilities, she mentioned that they would be more than willing to go into Jenna's school to do a presentation and get them involved. I told her GOOD LUCK. Not only have I tried repeatedly and unsuccessfully to get them involved, we can't even get a 504 plan out of them. The more we talked about that, the more outraged she became. Yep. She said they're on it now. Eager to see how this plays out. She suggested 1) Requesting a transfer OUT of that school 2) Contacting a lawyer since what the school is doing is highly illegal. I told her that I would wait and see what happens with the AF contacting them. If they still won't budge, then we will take action. I just left there feeling so good, knowing that we aren't alone. I also left with some great posters, "vintage" AF walk t-shirts, shoe laces and water bottles . So excited about the possibilities! OH, I also left with packs of paper "bones" to sell to raise money! I brought them to our pharmacy and they said they would be more than happy to sell them for us! You know, "Would you like to but a bone for $1 to help support the Arthritis Foundation?" Shyeah! We have some more stuff in the works too. Simply asking people to donate doesn't seem to be working so we are going on to plan B.

What a Weekend!

Our weekend started out with our first ever "Kid's Rheum" event. Since signing up, all of the events have been too far away for us to attend. So when I saw that this one was less than an hour away AND at a Children's Museum, I was pretty excited! So were the kids :) They had a blast playing with all the other kids at the museum. The grown ups had to sit and listen to speakers. I would have rather been playing but oh well. We heard from  a local pediatric rheumatologist and a psychologist that specializes in chronic pain management. They both spoke briefly and then we were able to ask questions. I asked, "Why does my daughter shut down and not want to talk about her JA and why does she deny any pain and or discomfort when it's so obvious that she IS in pain or uncomfortable?" They both said that unfortunately, this will likely only get worse as she gets older. It will be helpful to get her around other kids like herself so she gets a better understanding that she is NOT alone. Also to approach it like this, "Jenna, I know that you don't want to bother us with what's bothering you, but understand please that it isn't a bother to us. We want to help." Then give her options for how to deal with whatever it is, therefore giving her some control. It's worth a shot.

Then on Sunday morning we were off to South Carolina to meet the folks helping us to get to the JA Conference! I was so excited, eager, anxious all in one. We weer also exhausted due to being out late at the museum/event and thanks to daylight savings. Oh, and Daddy worked all night, but it's all good. They are such a great group of people with amazing hearts. They all welcomed us with open arms. When we were introduced I tried to thank them but 1) words will never be enough thanks for this incredible gift and 2) I got choked up and I hate that. It's still so incredible to me that our prayers of needing help, plus their prayers of needing someone to help brought all of this together!

I was planning on depositing the funds this morning so that I could get us registered and book our hotel room. BUT, Bean has a fever, an earache, a headache, has been asleep most of the morning and now her breathing doesn't sound right :( We have an 11:15 appointment with her regular ped so I figure we'll hit the bank then and I'll register and book later this afternoon. Hopefully we can get this kid feeling better. She had such a GREAT weekend! Stinks to start the week like this.

2011 JA Conference

The site is finally up!!! WOOT! The info that we have so desperately been waiting for is here! We are going into our third year on this journey but this will be our first year at the conference. Year 1 I don't think I knew anything about the conference, or if I did, I didn't think we needed it. HA! Year 2 we just had too much going on in our lives to even think about getting there. Year 3, this is our year! I am so excited to do this, I just can't even begin to describe it. Trying to figure out if we will go as a family since the rates are all the same anyway, or if just the Bean and I will go. If it's just the two of us we will take the train which will be way easier for her. If we all go we have to drive since 4 (or 5, another long story) train tickets will be too expensive. The drive will be painful for Bean, but then we aren't tied down to the train schedule which quite frankly, bites. So, lots of decisions to be made, but, bottom line is, at the very least, Mama and Bean WILL be there! And if Daddy and Bub have to stay home, they announced yesterday on their Facebook page that they will be doing webstreaming this year. SWEET! Not the same as being there but at least they can join in and learn with us. I cannot wait to meet all of these people that I have been blessed to come to know in a virtual world. I will finally be able to speak with them face to face, hug them, laugh with them, cry with them, SHARE with them, in person, in real life. SO very blessed. Thank you God.

This Isn't "JUST" Aches and Pains

This story is from the Let's Move Together Arthritis Walk Orlando Florida website. The arthritis that Bean and all these other kids suffer from is NOT your grandmas arthritis. It isn't from old age, or an injury. It's an autoimmune disorder. THAT is why it is so serious. It can attack ANY part of the body. I debated whether or not to even share this. It's scary and it's depressing. But ya know what? It's REALITY for us. A Tribute to the life of Jennifer Schott Jenny Schott as a child Jenny never wanted to be an outsider, and to her family and friends, she never was. But having been diagnosed with juvenile rheumatoid arthritis in 1980 when she was about 2 years old, she would soon find it impossible to live like everyone else. After a diagnosis during a hospitalization in Pittsburgh because of severe soreness and swelling in one knee, Jenny was prescribed increasing dosages of baby aspirin, up to 60 per day, to deal with the inflammation, soreness and pain. But, according to her father George Schott, the pain just got progressively worse as did Jenny's condition. "We would have to give her hot baths every morning just to loosen up her joints, and the aspirin never seemed to provide relief", says George. He continues,"As she grew and her condition became more complicated, her medications became more experimental ranging from extremely painful gold injections, steroids, growth hormones, to Methotrexate before they had much experience with proper dosage of this drug. The doctors tried all they knew, but treatment for the disease was not well known and she was very much an experiment for the doctors at that point". Despite the severe pain and experimental medication, Jenny strived very hard to maintain a normal childhood keeping up with all the other kids until finally around the age of 8 when it just became impossible. While she excelled socially and academically, her physical condition was deteriorating quickly. But she tried very hard to not let her disability get her down. Jenny was an accomplished and articulate public speaker, winning speech competitions as well as reading from the Bible at church. While most of us are worried about standing out in high school, Jenny couldn't help but stand out in her first electric scooter which she now had to use to get around. Still she took it in stride and her scooters and eventually wheelchairs became part of her identity in her school experience. It never was looked upon as a negative thing as she continued to excel, graduating from her high school number one in her class with the highest grade point average, a huge accomplishment! Jenny's High School Picture It was in high school that Jenny started to experience what would become the highlight of her life, teaching and helping others. She tutored other students and eventually started her own tutoring business. After high school, Jenny was determined to make her dream of becoming a teacher come to fruition. She received a number of monetary scholarships to continue her education including acceptance into Rollins College and a full paid scholarship to Stetson University because of her excellent academic performance. But she could not accept them because it would have required her to keep a full academic schedule. At this point in her life, her medications and physical condition were becoming so extreme that this wasn't an option. However, determined as ever, Jenny learned how to drive a specially designed van so she could get back and forth to college completely on her own since living away from home at this time was not possible. So she enrolled in Seminole Community College (now Seminole State College) which allowed her much more flexibility. While at SCC, Jenny was Founder and President of a support group called "Inside the Outsiders", where students dealing with handicaps could come together and share experiences and provide support to each other. Jenny also continued to tutor students from a number of local elementary and high schools, and even other colleges. She graduated from SCC with High Honors and Distinction with a 4.0 GPA, was a Member of the Phi Theta Kappa Honor Society, and an Associates of Arts in Mathematics degree in hand. Unfortunately, as Jenny was working hard to live her dream, the arthritis was working harder at destroying her body. "Over the course of her life, Jenny had virtually every joint in her body operated on and either totally replaced or fused by inserting steel rods in places like her wrists and ankles. It was surgery after surgery" reflects her father George. He continues,"Despite always being heavily medicated, none of the medications ever worked for Jenny". Still refusing to let the arthritis take over total control of her life, Jenny was able to get a job as a Mathematics and English teacher teaching students with learning or physical disabilities at a private school, and finally achieving her dream. At least for a short time. George Schott with daughters Jenny and Laura at Kennywood Amusement Park, PA Sadly, her dream became a physical nightmare. Her condition worsened until finally she had to leave the teaching field. Eventually Jenny was in so much pain that she had very limited mobility and spent much of her time with doctors, in hospitals, or at home in bed. Some of the medications she was given were so strong that they left her incoherent at times. The disease, as well as the effects of 20 plus years of drugs, operations, and experimentation, was affecting all of her internal organs. Her doctors, realizing how much pain she was in, kept her heavily sedated until finally they told Jenny that she had less than a year left to live. Jenny was at peace with this news, even orchestrating her own funeral service by selecting her clothes, readings from the Bible, and the music. With the help of Hospice, she spent the last six months of her life at home, mostly sedated to keep her comfortable as the arthritis finally took all control from Jenny's hands. And one of her last wishes was a very unselfish one. Jenny wanted to create a scholarship for handicapped students at Seminole Community College. Jenny peacefully passed away at the age of 26, a fully accomplished teacher having taught many lessons to everyone she met whether student or observer. To this day, the "Jennifer L. Schott Memorial Endowed Scholarship", which was started completely with donations in her memory, is awarded yearly at Seminole State College to provide financial assistance to other handicapped students to inspire and achieve success in their future endeavors. Her father George sits on the board that chooses the recipient from the group of students applying for the scholarship. It was years before George could openly speak about arthritis taking his daughter away from him. It also strained relationships with his other daughter Laura and ended his relationship with Jenny's mother. "Since day one, the Doctors told us that dealing with a child with a chronic condition would affect all of our relationships, especially the closest ones" he says. "The doctors also told us that Jenny was a textbook case of how extreme arthritis can consume a life and even take it". Having separated from and eventually divorcing his Jenny's mother, George found great solace and support from his current wife Lisa. "The first several years after Jennifer passed, George did not talk about it with anyone" says Lisa Schott. She continues, "Eventually, the time came where he was ready to turn this life-altering experience into something that would pay tribute to Jenny and help other families dealing with juvenile rheumatoid arthritis". George & Lisa Schott turning tears into triumph as they present Tony Ward with the first big check ($10,000) for the Arthritis Foundation. George and Lisa approached their friends for help, through the Parrot Heads of Central Florida, a social club whose slogan "Party with a Purpose" accurately describes its members' desire to make helping others a routine part of their life and a fun experience. Their brainchild would eventually come to light in the form of a Bowling Tournament to benefit the Arthritis Foundation called "Fruitcakes in the Alley", named after the Jimmy Buffet song "Fruitcakes". In its first two years, the event resulted in more than $25,000 for the Arthritis Foundation to benefit Kids with Arthritis. The third annual event scheduled for the last weekend in January 2011 is already close to selling out the bowling alley. It's a weekend festival of music, bowling, camaraderie and of course raising funds and awareness for the cause of arthritis. "We couldn't be more grateful for all the help and support of our fellow Parrot Heads in making this event a fun tradition that means so much to not only George and I, but also the Arthritis Foundation", says Lisa, now President of the Parrot Heads of Central Florida. "It has helped George tremendously to open up about and deal with all the emotions of losing a child, and rationalize what happened by helping others". Lisa also said "I am so proud of him for being such a strong, loving man and creating a legacy for Jenny that will live on and on". George and Lisa Schott can always be found orchestrating the music and announcements from the Tiki Booth at the bowling tournament. And each year, there in a picture frame sits a picture of a beautiful girl with a warm smile named Jenny Schott, who may have lost her battle with arthritis but won the war by inspiring her father, stepmother, and many others to bring awareness and necessary funds for research for a cure to the illness that never kept her from fulfilling her dreams.

Let's Move Together!!!

Stay Tuned....

So some of you may have been left wondering, what ever happened to Bean getting a 504 plan put into place? Yeah, we've been wondering that too. We last met with her teacher and school guidance counselor on Monday November 8th. If you'd like, you can go back and read all about that meeting here. I gathered all of my info from our pharmacy, her doctors and the Arthritis Foundation. It's a LOT of info making up a big, fat, blue envelope :) Of course there was the Thanksgiving break to get in our way and slow us down, and I know it's only been just over a month, but MAN it feels as though this has taken forever. I got an email from her teacher (LOVE her btw) this morning saying that we are on for this Thursday December 16th at 8 AM. Finally we are getting somewhere. Now I'm nervous though. After how badly our last "meeting" went, I am just terrified that I will either 1) Break down in tears of frustration, or, 2) Have a major angry fit. Either one will be ugly. So, please pray for ALL of us that will be in this meeting. Thanks y'all, and, like the title says, stay tuned...

Perseverance

per·se·ver·ance

  [pur-suh-veer-uhns]
A

–noun

1.

steady persistence in a course of action, a purpose, a state,etc., esp. in spite of difficulties,

obstacles, or discouragement.

Now that my friends is a word that you truly can't appreciate until it is put to use. *sigh* So on Monday morning we met with Beanz teacher and the school guidance counselor as mentioned here. I knew that we wouldn't actually be writing one up that morning and putting it all in place. However, I also wasn't expecting how we were all treated by the "counselor". So, so, so cold. I just can't seem to wrap my mind around all of it. According to her, since Bean is "excelling academically she is not entitled to a 504 plan, that is for students that need assistance accessing academics." Umm...no I don't believe so. That would be an IEP. We aren't asking for an IEP. We are asking for a "medically necessary 504" as her doctor called it. IEP's or individualized education programs are designed for children that need assistance with their learning process. Since Bean is at or above grade level in all subjects, clearly she doesn't need an IEP. A 504, of which she is legally entitled to under Section 504 of the Rehabilitation Act of 1973, is simply to ensure that she is safe and comfortable at school. That any accommodations that she may need as a child suffering not one but TWO chronic illnesses are in fact being made. Such as, a chair that isn't painful to sit in, time to stand up and walk around if need be, a place to rest during the day, special writing tools or even being excused from writing altogether, permission to use a rolling book bag, extra time to transition between classes, modified gym class, a nurses pass on hand for her to use at any given time, no limit on excused absences <----THAT is a big one. Children like my Bean miss a whole lot of school. For one thing, they have frequent doctors appointments, routine labs that need to be done, the illnesses themselves will cause days that make them need to miss school, then there is the fact that they have NO immune system and therefor pick up EVERY bug around. The tiniest bug that may give a "normal" kid a runny nose, can lay these kids out for WEEKS. These are just a few examples of why my Bean and the 300,000 kids just like her need a 504 in place. The "counselor" couldn't or wouldn't see any of this. Her teacher understands what Bean goes through and is willing to make any accommodations that she may need. But what if she leaves? What if the nurse leaves? What about next year? And the year after that? She is SIX years old!!!! I need to make sure that she gets what she needs NOW and through COLLEGE. YES, a 504 CAN go to college with your child. Once in place a 504 can be changed at anytime and should be reviewed at the beginning of every school year. The Arthritis Foundation has some great tips for school success. I also encourage you to reach out to your local office for help. I did after that waste of a meeting. I emailed our local office and heard back the next day. It felt so good to know that I have someone with me, that has my back in my fight for my Bean. I also would encourage you to go into your meeting prepared. Assumptions are SO dangerous. I simply assumed that the "counselor" would obviously be willing to help my child. Bring ALL the documentation that you can. Have a letter from all of your child's doctors explaining the diagnosis, a list of current medications and their side effects, a letter from your local AF office is a good idea too. So as it stands now, I am gathering all my documentation. Once I have it all neat and tidy I will be scheduling our next meeting. *rubshandstogether* CAN'T WAIT!

This Is GREAT News!

Arthritis Foundation Patient Advocate to Testify at FDA Hearing on Approval Pathway for Biosimilars

ATLANTA, Nov. 2, 2010 /PRNewswire-USNewswire/ -- Arthritis Foundation patient advocate, Jan Wyatt, PhD, will provide oral testimony on behalf of the approximately 4 million Americans with inflammatory arthritis at a Food and Drug Administration (FDA) hearing today. The hearing will focus on issues and challenges associated with an approval pathway for biologic products that are highly similar "biosimilar" or interchangeable with FDA-licensed products.

"The Arthritis Foundation commends the FDA for holding today's hearing to help guide the agency in moving forward with regulating these potential new products," says Amy Melnick, MPA, Arthritis Foundation vice president of advocacy.

Wyatt, who was diagnosed with rheumatoid arthritis in 2004, credits innovative scientific breakthroughs in biomedical research and use of a biologic for radically altering the trajectory of her disease. "A little over 10 years ago, a diagnosis of rheumatoid arthritis or juvenile arthritis would have meant a future of pain, loss of function and limited mobility," says Wyatt. "I am truly grateful for these life-transforming therapies."

Biologic therapies are regarded as highly effective forms of treatment for the management of symptoms and to reduce the risk of bone and joint damage for people with rheumatoid and other inflammatory forms of arthritis. Unfortunately, access to biologic therapies is limited or non-existent for many people due to their high cost. For these individuals, biosimilars represent great promise to improve their access to safe, effective and cost-effective options.

As new therapies are introduced, the Arthritis Foundation strongly recommends that the FDA require post-marketing studies of the newly approved biologics and biosimilars, including possible registry participation for surveillance purposes. In addition, the Arthritis Foundation believes more research is needed to guide the selection of the best biologic for the individual. Patients fortunate enough to have access to existing therapies often must try several therapies before finding one that works.

"Patients with inflammatory arthritis need to be assured that biologic and biosimilar therapies will be of high quality, accessible, safe and effective," says Wyatt.

The Arthritis Foundation welcomes the approval of new, safe and effective biosimilars and urges the FDA to:

• Move expeditiously to create a regulatory pathway that provides appropriate oversight, ensures patient safety and ensures access to these potentially lower-cost biologic products.
• Require clinical studies to ensure biosimilars work as well as approved products in the targeted population.
• Require rigorous post-marketing surveillance for any newly approved biologic and/or biosimilar and to seek ways to improve the current system for reporting and responding to adverse events.
• Reach out to patient organizations, such as the Arthritis Foundation, to improve its communication efforts regarding biologic products.

More information about inflammatory arthritis and its treatments is available on www.arthritis.org.

The Arthritis Foundation (www.arthritis.org) is the leading health organization addressing the needs of the 50 million Americans, including 300,000 children, living with arthritis, the nation's most common cause of disability. The Foundation helps individuals take control of arthritis by providing public health education; pursuing public policy and legislation; supporting research and conducting evidence-based programs to improve the quality of life for those living with arthritis.

SOURCE Arthritis Foundation

AUCTION CLOSED!

And that's it folks! Thank you so much to all that placed bids but there can only be ONE winner. Well...three if you want to get technical. Anyway, the Auction For Arthritis has officially closed. I will be messaging the three winners. Thanks again! This helped us raise an addition $115 for The Arthritis Foundation! WOOT!