You are browsing the archive for fundraising.

Unique Fundraiser: The Sky’s the Limit!

December 7, 2016 in Events

Skydive fundraiser for the Rheumatoid Patient Foundation
We love it when our members create unique fundraising events that really tie into their own identities and passions. With a little creativity, any interest or hobby can be tied into an activity to raise funds for RPF -- the sky is the limit! We'd like to introduce you to one of our members who took this idea quite literally.

Meet Anja. Anja contacted RPF in relation to a Sky Dive event she had been planning for the summer of 2017 in the UK. Her idea was to turn a sky dive into a fundraising event, benefiting the Rheumatoid Patient Foundation and the UK-based National Rheumatoid Arthritis Society. But rather than us tell you about it, we want you to hear directly from her what she's doing and why.

Interview with RPF Member, Anja Gilmour:

RPF: Thank you, Anja firstly for reaching out to RPF and thinking of us as one of your charity partners--and also for taking the time to share a little more with us. Firstly, can you tell us a little about yourself?

anja1

Anja and her husband, Alastair.

 

Anja:

Hello! Thank you for including me in your blog post. I’m very excited to be doing this charity fundraiser for RPF!

I live in Palm Springs, California, with my husband, Alastair. I have three grown children, Jessica (age 33), Ryan (age 30) and Jonathan (age 26)…..no grandkids yet, but do have a grandcat (Turbo), two granddogs (Gizzie and Moe) and a grandhorse (Sophia)! Another special person in our family is Jonathan's girlfriend, Dana.

 

 

anjas-kids

Anja's 3 kids, plus her son's girlfriend.

I am an independent bookkeeper and work from my home office. When I'm not working, I love to do art, swim, read and play challenging online word games with my very hard to beat Mother! My husband and I have been married for 10 years. He is a PE teacher at a private school, but until this year, had been teaching 4th grade at the school for the last 30+ years. That is where I originally met him as he was my children’s 4th grade teacher. My late husband passed away 14 years ago after a long battle with cancer and after a couple of years, I started dating Alastair. At that time I worked at the school as the Business Manager so we were in constant contact with each other and after spending time with him, discovered we had a lot in common. My kids were shocked when they found out but extremely pleased as they love Alastair and he is a wonderful step-dad to them.

My Mother, Roma, (who is from Scotland) lives in Eugene, Oregon, with my wonderful “Pops” Shannon (Step-Dad). My Father, Ralf, lives in Tucson, and is originally from Germany. I was born in Nigeria, Africa after my Father was transferred there to run an automotive dealership but came to the States shortly after where we all eventually became American citizens.

Jessica is involved in the horse racing world in race track management, Ryan is employed in the hospitality industry, Jonathan is a software engineer and Dana is working her first year as a 4th grade teacher.

Every summer my husband and I go to the UK for about 5 weeks to visit our many friends and family. We travel the country for about three weeks, ending up in the Salisbury area for the last two weeks in a rental cottage close to where my husband was born and raised. I love the UK and we hope to be able to split our time between there and here in the States once we retire. We both are fanatical football (soccer) fans and support a team from Southampton called the Saints. While we are in the UK, we try to see as many home and away games as possible and while in the States are able to watch them live every weekend on the TV. We sit with our Saints slippers on, our Saints team shirts and drink tea from our Saints mugs during the games. It really is quite ridiculous, I must say! But great fun!

RPF: Can you please tell us about your personal connection to rheumatoid disease and why you chose RPF as one of your charity partners?

Anja:

anja-daughter

Jessica at the Breeder's Cup

About eight years ago I was diagnosed with RA and Sjogren’s. I honestly believe, though, that I have had this for quite some time but hadn’t been diagnosed properly. I have a fantastic rheumatologist who is always there for me whenever I have any issues and has worked diligently in trying to find the right medications and has always gone to battle for me when switching to a new medication and having my insurance initially refusing to cover it. After many years of trying biologics and having a very short shelf life for helping me, I am currently doing 4 Rituxan infusions a year, in addition to weekly injections of Methotrexate. It seems to be helping me quite a bit, so hoping it will continue. Sadly, my daughter has recently been diagnosed with both these diseases as well, so it has really hit home. And, one of our good friends in the UK who has had RA for 30 years has been affected greatly.

I did a tandem skydive last year while we were in the UK and was impressed with the organization’s support of people who were jumping for charities. When my husband suggested that I do an anniversary jump every year when we go back, I thought what a wonderful thing it would be for me to “jump” for a cause. I am very fortunate to have a loving and supportive family, friends and doctor, but know that there are many people suffering from this awful disease who do not have this great support that I have, so I decided without a doubt that I wanted to benefit an RA organization both here in the States as well as in the UK. After research, I found the NRAS in the UK and RPF in the US and knew immediately that these were the organizations I wanted to support. Both organizations are wonderful and are doing such great things to help people with RA as well as working on getting more public awareness about this disease.

 

 

 

RPF: We love unique fundraisers, but we're curious: why sky diving?

Anja:

anja3

Anja's 2016 Sky Dive

Why Skydiving? That’s a good question! And to be honest, many of my family and friends think I’m nuts, but that’s ok! I guess I’ve always been a bit of a daredevil. In the late 80’s, I started racing a Porsche in Vintage Road Racing and then later ran a Formula Ford series with the Sports Car Club of America. I loved it and was actually quite good. My Mother’s Dad and brothers all raced in their younger years as well and I have an Uncle who actually once beat a soon to become famous race driver called Stirling Moss. In the early 80’s I got my pilot’s license and would hear fellow pilots talk about skydivers and ask why on earth would someone want to jump out of a perfectly good airplane?! And I can’t really argue with that. I had always wondered what it would be like but never really thought any more about it and certainly didn’t ever think I would do it. But last year, Alastair and I went to a little airfield in Salisbury, and lo and behold, there was a skydiving company located there! As I watched people participating in jumps and seeing their excitement after doing one, I decided to check it out further. So after finding out more about the company and talking to their employees and getting all the information I could possibly find about skydiving, I signed up for a jump. And that’s how it all began!

RPF: What do you hope to accomplish through your charity sky dive?

anja4

Getting ready for the dive!

Anja:

Doing this skydive will not only be an accomplishment for me personally, but also something that I hope will benefit RPF and NRAS to help further the hard efforts these organizations are doing for a cause that is close to my heart. Personally, to be able to participate in something like a skydive when you have RA is in itself remarkable and am so grateful that I am able to do this. I hope to inspire and encourage those who have RA, both young and old, and to give a positive message to those that are feeling weighed down and depressed with their condition. Believe me, I know what that’s like and it can be very difficult for not only the ones who are physically and emotionally suffering from this, but to those around us as well. Knowing that maybe what I’m doing will give someone who suffers from RA hope and determination to keep on going no matter what is a great reward to me. I feel that as someone who suffers from this disease it is my responsibility to help get the word out about what RA REALLY is and to hopefully have some part in what your organization promotes for awareness, support, advocacy, and ultimately to one day see a cure.

 
 

 

RPF: What are the specifics of your event and where can people go to learn more and donate to your event?

Anja:

My skydive will be done with a company called GoSkydive on Thursday, August 3, 2017, at Old Sarum Airpark in Salisbury, England. Last year I jumped from 10,000 feet but this year I will be doing it at 15,000 feet. After the first of the year, I will be starting a Facebook page and webpage solely for the purpose of this skydive fundraiser and will have links to a donation site. I want everyone to know that my skydive is completely self-funded and that 100% of all monies donated will go entirely to the non-profits. If anyone wants to get in contact with me prior to kicking off the fundraiser so that I can put them on my contact list, or have questions, etc., etc., that would be great! You can contact me here.

Visit Anja's Fundraiser Website or Facebook page for more details!

Anja will be getting a video and professional photographs during her sky dive and we will share those with you afterwards! In the meantime, check out the video below to see Anja's previous sky dive and the inspiration for her charity dive in August!

Interested in creating your own fundraising event? Contact us with your ideas and we'd love to partner with you in your efforts!

by KatieB

I Support RPF Because Patients Are the Best Advocates for Patients

January 28, 2014 in Advocacy

Rheumatoid Awareness Day is only a few days away, February 2. RPF member Elizabeth Riggs shares why she and her family support RPF. Dr. Riggs has served as a healthcare professional, educator, caregiver, and now as a patient gives her invaluable perspective on patient advocacy.

By Elizabeth Riggs, PhD

I support RPF because: There is no other charity just for Rheumatoid Disease.

Ted-Eliz-Shan-ACR13On a personal basis, as I have RD, and follow the rawarrior.com community, I am very much aware of the gaps in the support available for people living with rheumatoid disease (PRD). My husband, who has cardiac and lung disease, works hard to help me with my activities of daily living (ADLs). We cannot afford homemaking or personal services and don't qualify for any government-supplied services. Only through increased public awareness would those gaps in care be closed, so these kinds of services ever become more available. We don't qualify for drug assistance, so I cannot get on any of the biologicals. So far, I haven't qualified for any clinical trials, so I am "stuck" with "older" medications which are inadequate to my disease state.

Although we are personally blessed to have nearly all of our family members and many of our friends who are both understanding and supportive, there are many people who do not have these blessings. Only through improved public awareness will these gaps in support begin to be closed.

Many rheumatologists, especially in the USA, don't seem to have a clue (!) as to the pain and disability we PRD experience. So, they can’t do all our advocating for us. And we must help them understand. Only through professional education will we bring medical professionals to the level of understanding that will make a difference to PRD.

Drug companies don't seem to realize the suffering experienced by over two-thirds of PRD who don’t respond adequately to current treatments. Helping them see the need for more research, additional patient support, and reduced cost of drugs for RD is absolutely necessary!

The RPF addresses these needs and more through public awareness, professional teaching and education, patient-driven research, and PRD support.

The RPF can ONLY address these needs if we provide the money and volunteers to support RPF!

So, my husband and I support the RPF in every way we can!

Cheerio!
Elizabeth Riggs

You can read more from Elizabeth on her blog – click here.

by KatieB

Rheumatoid Awareness Jewelry

July 2, 2013 in RPF News

By Katie Beth Young

Just before the first Rheumatoid Awareness Day, the Rheumatoid Patient Foundation (RPF) released the Rheumatoid Disease awareness ribbon. We had a great response. Many of you have used the ribbon in many ways including on social media via Twibbon or at local awareness events.

Rheumatoid Awareness Bracelet

Here's a lovely RD awareness ribbon that you can wear!

     

RPF member Paige Wright has created bracelets, earrings, and keychains out of the Rheumatoid awareness ribbon in her handmade jewelry store called Wright at Home Crafts. She has decided to donate 5% of the proceeds of all of her sales to the RPF. Thank you so much Paige!

You can get your Rheumatoid Disease awareness jewelry here and Paige's other handmade disease awareness items.

Be sure to check out the partners page for our corporate members and partners. If you or anyone you know is interested in being  a corporate member or business partner like Paige, send me an email at katieb@rheum4us.org

by KatieB

Susan Cabral Donates Song to Rheumatoid Patient Foundation

February 2, 2013 in RPF News

Screen shot 2013-02-02 at 10.38.14 AM

By Kelly Young, founding president of the Rheumatoid Patient Foundation and author of Rheumatoid Arthritis Warrior

Susan Cabral is a beautiful person with an extraordinary voice. This tribute to her mother tugs at my heart both as a mother and as a daughter. The hopeful lyrics are especially meaningful to those living with rheumatoid disease because Susan cared for her mother who had the disease and later lost her to complications resulting from it. I hope BEFORE THE FIRST SNOWFALL touches many others with the reality of this disease.

BEFORE THE FIRST SNOWFALL is a beautifully touching, original, mother's tribute memorial song by BOSTON GIRL Country Music Singer-Songwriter SUSAN CABRAL, inspired by her mother, for yours. All proceeds go to support the RHEUMATOID PATIENT FOUNDATION.

Susan Cabral (BMI) is a Boston-based Singer-Songwriter, genres of Country / Pop / Soft Rock, who is well known as a gifted writer of the short story, writing with raw emotion, honesty & abandon. Her naturally beautiful vocals & pretty harmonies will deeply touch your heart as she sings her original Country Music song BEFORE THE FIRST SNOWFALL.

ALL PROCEEDS of Susan's BEFORE THE FIRST SNOWFALL go to support RHEUMATOID DISEASE, in honor of her mother, via the nonprofit RHEUMATOID PATIENT FOUNDATION.

CLICK here to buy BEFORE THE FIRST SNOWFALL for 99 cents

by KatieB

FIRST-EVER RHEUMATOID ARTHRITIS DAY, FEB. 2, BRINGING THOUSANDS TOGETHER

January 31, 2013 in Press Release

FIRST-EVER RHEUMATOID ARTHRITIS DAY, FEB. 2, BRINGING THOUSANDS TOGETHER

Patients Uniting to Overcome Misconceptions; Crescendo Bioscience® to Match Donations to Rheumatoid Patient Foundation

January 31, 2013 – The first-ever Rheumatoid Awareness Day, to be celebrated on Saturday, has already brought thousands of patients together to begin the process of educating the public about rheumatoid arthritis. Almost 6,000 have signed up to recognize the day on the Facebook page for this event, with others preparing to host local events and writing officials requesting recognition of Rheumatoid Awareness Day.

In addition, Crescendo Bioscience®, Inc. is providing a matching grant for donations to the Rheumatoid Patient Foundation (RPF), the group that established Rheumatoid Awareness Day, up to $10,000. RPF encourages both patients and the public to join this first awareness day by donating with the link http://bit.ly/give2RPF. Crescendo Bioscience is a molecular diagnostics company that offers Vectra™ DA, a multi-biomarker blood test that measures disease activity in rheumatoid arthritis patients.

The stories posted on social media have underscored the impact of the disease; some have posted about the career they enjoyed before the disease or about having had the disease since childhood. James posted, “It's such a struggle on a daily basis for those of us with this disease, and to have those around us say, ‘I know how you feel, I've got a little arthritis pain in my finger or toe or wherever.’ This is so much more than just arthritis.”

One goal of this initiative is to overcome the misconception that rheumatoid disease is a form of arthritis. While the disease usually affects joints, the disease process is not the same as osteoarthritis. RPF founder Kelly Young points out, “Joint inflammation is a prominent symptom of this disease for most patients, but it’s a disservice to refer to it as merely a type of arthritis.” She explains, “Just today a patient posted about the severe effects of her rheumatoid lung disease saying her joints feel better than they have in years.”

Rheumatoid arthritis is a progressive inflammatory disease causing damage to joint and organ tissues, resulting in pain, frequent disability, and increased mortality. RPF gives a voice to millions of people with this disease which, despite the lack of awareness, is rather common; Mayo Clinic says lifetime risk of the disease is 3.6 percent for women and 1.7 percent for men.[1]

The Rheumatoid Patient Foundation established Rheumatoid Awareness Day as the second of February, drawing analogies between Groundhog Day and the crucial window of opportunity after disease onset for rheumatoid patients to get early diagnosis and treatment. And it falls during Heart Disease Awareness Month, highlighting the link between rheumatoid disease and heart disease. Rheumatoid patients have a higher incidence of stroke, atrial fibrillation, and silent heart attack. For more information on how to support Rheumatoid Awareness Day, visit http://rheum4us.org/rheumatoid-arthritis-awareness-day/.

About the Rheumatoid Patient Foundation

RPF is a 501c(3) non-profit organization dedicated to improving the lives of people with rheumatoid diseases such as rheumatoid arthritis and juvenile arthritis. RPF was founded in 2011 to address a significant lack of disease education, comparatively low levels of research funding, and difficulty obtaining adequate treatment. RPF is committed to creating pathways to better clinical care and disease outcomes through education, awareness, and participation in patient-centered research. For more information, visit http://rheum4us.org or follow RPF on Facebook or Twitter.

###

[1] Mayo Clinic. 2011. Mayo Clinic Determines Lifetime Risk of Adult Rheumatoid Arthritis. http://www.mayoclinic.org/news2011-rst/6137.html?rss-feedid=1

 

by KatieB

A Birthday Story

October 14, 2012 in Exciting

By Eric Neevel

Birthday Cake

Birthday Cake

Birthdays! A time for cake, ice cream, celebration of life, and hopefully, gifts. But what if instead of receiving birthday gifts you used the opportunity to give a gift? Recently, we connected with Rheumatoid Autoimmune Disease (RAD) patient Tanya Martin to discuss what led her to do exactly that.

Tanya -- who has personally suffered with RAD since 2003 -- used her last birthday as an opportunity to raise money for the Rheumatoid Patient Foundation (RPF). She set up an online fundraiser and encouraged friends and family members to donate to her cause as a birthday gift for her. Starting her cause just a few weeks before her birthday, it only took a few days to exceed her personal hopes of raising $500. In about a two-week time period Tanya went far beyond her goal by raising a total of $1,161 for the RPF.

Using Causes.com helped Tanya make her idea a reality. “Causes.com makes it really easy. Three easy steps and they had the page ready to start accepting donations.” Then, using the power of social media, she began to promote her cause. “I did a few posts on my blog -- TanyaMartin.com -- about it and almost daily tweeted it on Twitter, shared it on Facebook, and other social websites. Most of the money came from friends and family, [though] some came from the social marketing.”It wasn’t long before the donations started and Tanya’s goal was met.

Tanya explained why she chose the RPF. “I have wanted to start a non-profit for RA since 2006,” she said, but the realities of life with RAD, raising a family, and running a business prevented her from achieving that goal. However, last year her dream of having a non-profit solely for RAD came to be when the RPF was formed. “I feel I got what I wanted for years. RPF definitely has any time, marketing, or any other help I can give them. I really appreciate that there is finally a place for patients with RA.” She explained that her passion for the RPF is more than her simply being affected. “My mother had severe Rheumatoid Arthritis starting in her early 30’s. I can remember opening jars, putting gas in the car, or just running into the store for her before I was even a teenager.” Tanya also has a sister who has RAD as well, making her fundraising cause a family cause.

One of the nice things about birthdays is that we always know when they are coming, and Tanya is already making plans for her next one. “I will definitely do this again for my next birthday and I might use it for a personal wish. Causes.com also does memorial, personal, holiday, wedding, run/walk, and ride wishes.” Using their services made this an easy and achievable goal for anyone. “I would ask for a higher amount and start a month before my birthday instead of a couple of weeks,” she said in closing. A gift worth sharing for any cause and worth considering for ours, and one that looks beyond receiving to giving again and again.