Anyone who knows me - lifetime friends or new acquaintances - will tell you that I’m very passionate about raising awareness, and funds, for special causes. We all have a cause that is near and dear to our heart. Mine is my family, and their health.
My daughter Ally was diagnosed at age 13 with a form of arthritis called Spondyloarthropathy. It has changed the way she - and I - go about living life. She is my inspiration and has dealt with this condition by being positive and outspoken. And I have, in turn, taken every opportunity to raise awareness about arthritis affecting people of all ages, races and walks of life.
Most if not all of us know someone with arthritis. It’s a debilitating group of diseases (numbering over 250 kinds!), affecting approximately 70,000,000 Americans, that prevents people from living an active life. With more awareness, research funding and a bit of luck, we will all be better off despite this disease.
The internet is chock full of resources for people with arthritis, but be careful about who you trust and what you hear out there. Nothing is a substitute for your own physician and his or her advice. However, knowing more means a better conversation, so that feeling of “hopeless” and/or “lost” can be replaced by “empowered” and “comfortable”.
Great starting places for more information:
1. CreakyJoints is an organization started by a friend of mine when he was 18, Seth Ginsberg, who also has Spondyloarthropathy. This free online community provides useful information, tips for living, clinical trial updates, message boards as well as fun sections like an advice columnist. An e-mail newsletter goes out every other week with fun and useful information and updates. All forms of arthritis are discussed.
2. Arthritis Foundation is an arthritis advocacy group with local chapters that organize fundraisers like walkathons and golf outings. They’re also a good resource for local physician referrals.
3. AARDA is the only national organization dedicated to eradicating, educating and supporting people with autoimmune diseases (a major cause of some forms of arthritis).
4. Spondylitis Association is the first - and largest - organization dedicated to supporting people suffering from anklyosing spondylitis and related diseases.
5. National Institute of Health is a Federal resource for clinical information, updates and clinical trial information.
6. Arthritis Research Center is an example of an academic institution with good resources for arthritis research and education. If you live near a major medical institution, contact the community education department to determine where and when arthritis research and education groups meet.
January 22nd, 2010 at 8:49 pm
Great work! I am posting so that others can help you support your cause. Good luck! XO Jill
January 22nd, 2010 at 4:07 pm
Hello Jill! It is such an honor to actually contact you! I have been dreaming about this for so long, you have NO idea! I’ve watched & followed the majority of seasons of all of the Housewives, however, you captured my interest and heart the most. You are so inspiring to everyone out there, honestly. I love that you are so involved and do so much for charities of all kinds. My daughter was born with a fatal, genetic disease called Cystic Fibrosis (also known as CF) and last year, a friend of mine (who also has a child with the disease) started our own walk-a-thon to benefit the Cystic Fibrosis Foundation and raise funds for vital research to find new treatments, medications, and even a cure. We also put together this walk to raise awareness in our community because it is somewhat of a rare disease. However, even thought it is labeled as rare, it is pretty common. 30,000 children and young adults are affected by this disease in the U.S. alone. We only had 30 days to plan, fund-raise, organize, promote and host this walk last year. We raised almost $10K, just between the two of us!!! Huge accomplishment, I know. However, this year, we have about 6 months to plan it and we would like to make it even bigger this year. We were so honored when the Cystic Fibrosis Foundation added our walk to their National Great Strides Campaign! So this gal and I were discussing the walk with the Event Coordinator at the CFF and were hoping to bring in some big grants, sponsorships, donations and possibly some celebrities or famous faces to draw a bigger crowd to our cause. Do you think it would be possible, at all, for you to help out our cause in any way shape or form???? I know this is such a long shot, but I know you, out of all famous people, get where I’m coming from, you truly care about the cause behind the fund-raising and you like to make a difference in people’s lives. This could possibly make our mission and raise funds and awareness on a whole new level! If you would be interested, at all in helping in any way, please contact me. Our walk is set for Saturday, July 17, 2010 at the Tulalip Casino & Resort Amphitheatre in Tulalip, Washington. My email address is brandy.krug@yahoo.com and my “Great Strides” website from last year is http://www.cff.org/great_strides/brandytulalipwalkkrug
My website for this year isn’t up quite yet because the national CF office hasn’t added our walk to their site just yet.
I thank you, in advance, for any interest you may express or for any advice or knowledge or kind words you have to offer. Please know that by helping us, your generousity will go such a long way and will mean so much to so many. It could provide these children with a better quality of life. Back in th 1950s, children born with CF didn’t even live to make it to Elementary school. With the help of so many donors, sponsors and the great work of the Foundation, the median life expectancy is now 37 years of age!! It is truly amazing what they do! You can check out more information at http://www.cff.org if you would like and my contact at the Seattle Chapter is Allison Thrasher and my contact at the national office is Mary Dwight. Thank you so much for taking the time to read my post!
Brandy Krug
brandy.krug@yahoo.com
January 17th, 2010 at 3:56 am
Ah, I’m happy I added your blog to my bookmarks, otherwise I would have missed this. Thanks for this, and happy 2010 to you.
November 12th, 2009 at 7:20 pm
Hi Jill & Alli,
I am a 15 year old girl rom minnesota. about 2.5 years ago i was diagnosed with Spondyloarthropathy tooI love watching your show because when alli and you talk about arthritis it is nice to know someone else is going thru the same thing. i love all the events you do. i was just wandering if you have any tips on how to live day to day llike this?
June 4th, 2009 at 2:56 am
I too have Spondyloarthropathy and was totally surprised when I heard the word on my TV! I hope Ally has found a treatment that works well for her.
Most of my life I wrestled with a number of seemingly unrelated symptoms until a simultaneous flare up of my neck, shoulder, wrists, ankles, lower back, knees and hips developed in my early 30’s and I was finally diagnosed. Thanks to a good cocktail of medication - a combo of Naproxen and Sulfasalazine - I have been stable for 5 years now with only the occasional flare up. Of course, my physical activity has been greatly reduced (I used to dance) but otherwise my pain is kept to a minimum and I can do most things. Swimming is a god send.
I thank you for bringing attention to this disease.
I wish Ally the best with finding a treatment that works for her and the same for any others struggling with Spondyloarthropathy. There is hope on the other side and life can be lived to the fullest!
Best,
Rachelle
March 8th, 2009 at 5:02 pm
Hi Jill,
I was diagnosed with Polyarticular Juvenile Rheumatoid Arthritis when I was 13. This disease is the worst. It has been a very difficult time for me. I understand completely what Ally is going through. I wish Ally and your family nothing but best wishes.
Thanks,
Savannah
February 17th, 2009 at 10:55 am
Hi Jill,
I too was diagnosed 25 yrs ago with polyarticular rheumatoid arthritis. It’s been a rough road, but I’m running half marathons and coping daily with symptoms.
I’d love to get involved, do public speaking or something to let people know that you CAN live a normal life.
Thank you,
Shona
January 6th, 2009 at 3:01 am
Hi Jill.
You’re one of my favorites on the show - you’re really funny and have a good sense of humor!
I think it’s great that you want to make awareness on arthritis! Have you and your daughter found a solution to her arthritis? I am writing to you because I’ve heard that bee stings are a very effective treatment to arthritis. Watch these videos on youtube.com (http://www.youtube.com/results?search_query=bee+sting+arthritis&search_type=&aq=f)
Looking forward to the new season of Real Housewives of NY!
Best regards,
Katrine