Showing posts with label multiple sclerosis. Show all posts
Showing posts with label multiple sclerosis. Show all posts

Sunday, August 4, 2013

A New Challenge Begins

I was never petite but I recently hit some bad milestones. My weight went higher than ever before but I did start bring that down a bit earlier in the year. Still, I have about 100 pounds I need to lose before reaching the weight that's healthiest for me. It's kind of interesting to think back to when I was in high school and my early adult years. Back then I thought I was fat but I would give anything to be that size again.

Last month, a visit to the doctor brought a lot of bad news. I already had high blood pressure and diabetes and cholesterol problems got added to my list. Expanding the battle beyond just trying to lose weight made things much more serious. My list of problems was creating a situation bringing me closer to a heart attack and I could no longer just be okay with how I look.

There are a lot of things I used to do that are more difficult now. I don't have the strength or endurance I had when our kids were younger. It was frustrating to feel those limitations during our big events at work. An office job body doesn't help at a major event where there's a lot of loading, unloading, setting, down, cleaning up, and general running around.

Feeling accountable is one of the best ways to help yourself stick to a plan. I decided to make this whole thing a win-win by turning it into a fundraiser. My mom battled her weight but was restricted by her multiple sclerosis (MS) in what she could do to stay active. I want to honor my mom by having the money I raise go to finding a cure for MS. My goal is to lose 30 pounds by October 4 (my birthday) and I'm having people pledge to donate for each pound I lose.

There's so much to battle when it comes to weight loss:
  • Time - it takes time to prepare healthier foods and it's so much easier to grab fast food
  • Money - a lot of the healthier options cost more than the unhealthy ones
  • Culture - I married into a culture that celebrates everything with food. You don't decline the offers of food either. 
  • Regular eating - for both weight loss and diabetes it is important to eat regular meals and not skip any
  • Exercise - I'm not a fan of working out and my job and the commute leave me sitting most of the day. Fitting in the exercise will be a challenge for sure.
Fortunately, I'm getting more support than I ever imagined. Encouragement on Facebook from friends and family have already made this better than past attempts at losing weight. I'm making good use of SparkPeople.com, the best free weight loss resource online. I also got a huge surprise when a new friend and his wife gave me a bicycle they weren't using anymore.

I've only lost a few pounds so far, but at least I'm going in the right direction now.

Sunday, April 14, 2013

An Insider's View of Nonprofits

For nearly 12 years now I have worked for nonprofit organizations. In addition, I have worked with a handful of other nonprofit groups in a volunteer leadership capacity. In hanging out on Facebook tonight, I saw a post that got me all worked up. It was an infographic that claimed to tell about how some very large charities were paying large salaries to their executives and how some smaller charities were putting more of the money donated to "the cause."

After a quick check of Snopes to see if anything had been said about this infographic, I found that the information it presented was old and very inaccurate.  Unfortunately, things like this fly across Facebook at amazing speed and most people will just decide to turn their backs on larger charities without ever trying to learn the truth.

If you intend to give to a charity/nonprofit, you should be checking to see where the money goes. I'd like to .
tell you some of the things I've learned so you can have a better understanding of how some of these organizations work.  I'm no expert, but I have a working knowledge to share. The first thing to be aware of is that charities need to be recognized as such by the IRS. Getting that official nonprofit status means that they've set up the organization and proven their purpose and that they will have to meet certain standards to keep that status. Not every charity is a nonprofit. There are actually some charities that are for profit rather than nonprofit.

My biggest pet peeve when people look at and judge nonprofits is that they assume that everyone involve should be working for free or for very tiny salaries. Good will and desire to help drives many people to volunteer their time and talents to the causes they believe in, but how many of you would be willing to work a 40+ hour per week job all year long without any pay? Those in executive positions would make at least 2-4 times more for the same work in a for-profit company. In my current job with the National Multiple Sclerosis Society, we make very good use of volunteers and the hours they contributed last year were equivalent to five full-time employees.

The task of calculating where the donated money goes is a very interesting process. You have to determine how much money went toward the mission of the organization. That could be programs, services, research, etc. On the other side are the administrative and fundraising costs. Although some donations would probably come in without prompting, the majority of donations will come in through fundraising campaigns and events. There will generally be costs associated with either of those activities.

For example, I manage our Walk MS events in Utah. We do what we can to get things donated and have fees waived, but we still have a lot of costs involved. It was a challenge to do the budget and determine every penny needed and where to cut spending. Here is just a sampling of what costs go with this type of event:
  • event permits
  • police fees (for blocking streets along the route)
  • location/park rental
  • food and water for participants
  • signage (sign, sign, everywhere a sign)
  • bibs (race number) and safety pins
  • design and printing of posters, brochures, postcards, etc.
  • design and printing of event shirts, volunteer shirts
  • prizes/incentives to motivate fundraising by participants
  • rental of sound system, tables, chairs, tents
  • envelopes, letterhead, and postage for letters to acknowledge and thank donors
  • miscellaneous office supplies and printing for registration forms, waivers, check-in lists, etc.
  • first aid/emergency personnel
  • gas/mileage, truck rental, etc. to haul supplies
  • armored transport for money
  • advertising for event
  • bank fees for credit card donations
  • software platform for online fundraising
  • salaries of staff involved
Even with a fundraising campaign, you're paying for the envelopes, letterhead, and postage and then the salaries of those involved with preparing and executing the campaign. Bulk mailings can help with costs for sending out a lot of appeals at one time. Despite the way most people seem to feel about these appeals, they tend to bring in more than what was spent with much less effort than a large event or phone campaign.

I used to work for a different nonprofit that had a very different setup. It was a residential treatment center for youth and the fundraising (or development) side of things was actually quite small. Funding for the treatment provided came in from various agencies, health insurance, and families of the clients. That meant that the basic needs of the facility were already taken care of. Fundraising targeted specific needs and improvements to the program rather than the daily needs. In some ways, they could claim that 100% of the donations went directly to the cause and nothing was spent on administrative and fundraising expenses since the employees, buildings, equipment, etc. were already being paid for and weren't dependent on the fundraising. It makes sense, but the official way of calculating it isn't swayed by that logic. Salaries for executives and the development personnel had to be weighed against the small number of donations that were coming in (fees for the services provided aren't donations) and that gave an unfavorable picture.

Next time you decide to support your favorite cause, check to see how they handle the money and keep in mind what it takes to keep that organization up and running. If you decide to be part of a charitable event that doesn't charge a fee, I hope you will consider donating a few dollars to offset the costs of that "free" event. I hope you will also consider how you can make a difference by contributing your time and talents (especially professional skills) as a volunteer for your favorite charity.

Sunday, April 7, 2013

Win a Keepsake Tatted Lace Doily

I'm doing something bold here to support a cause dear to my heart.  I'm offering up a tatted lace doily that I made for my mom. In 1999, I lost my mom to complications due to multiple sclerosis (MS). She had lived with MS for 25 years and was only 54 years old when she died. The doily I made her returned to my possession at that time and I've decided that it's time to bring it out of storage.

I am raising money for an event called Walk MS. It supports the National Multiple Sclerosis Society and will help fund research to find a cure so nobody else has to lose their mom to this horrible disease.  For every $1 donation to my fundraising efforts, your name will be entered into a drawing to win this doily ($5 donation puts your name in the drawing 5 times). I will draw the winning name on May 1, 2013.  Donations can be made online, delivered to me in person, or mailed to the National MS Society (address below).

Thank you for anything you are able to give. Giving up this keepsake will be worth it if it brings us closer to finding a cure.

Mailing address:
National MS Society
1440 Foothill Dr., Suite 200
Salt Lake City, UT 84108
(Please make sure you include a note that says "Karen Tapahe, Walk MS" so the money is credited to the right place)

The doily is approximately 8.5 inches across and tatted in peach colored cotton thread. This was one of the first doilies I ever tatted.

Thursday, March 21, 2013

Changing the World in Just One Day

There is an amazing new trend and it's absolutely awesome! Various communities are holding giving days. These are 24-hour fundraising blitzes encouraging people to give where they live. The state where I live (Utah) is having it's Love Utah Give Utah campaign on Friday, March 22, and I'm thrilled to be involved.

One of the wonderful things about this campaign is that many smaller nonfprofit organizations are getting exposure because of the campaign as a whole. In Utah, the hosting organization is also giving extra donations of $1,000 - $2,500 to the causes/organizations that bring in the highest number of unique donations. That's the number of donations, not the dollars given in the donations! This is a great opportunity for those of us working for organizations that have lots of regular people donating instead of major donors.

Another cool thing is the potential for doubling your donation. I heard this morning that there are companies like Maverik and IntegraCore willing to match employees' donations. Some of the charities have also lined up matching donors.


My mom - walking with only
20% feeling in her legs
after 13 years with MS.

My heart is with the National Multiple Sclerosis Society and not just because I work for the Utah-Southern Idaho Chapter. I was only nine years-old when my mom was diagnosed with multiple Sclerosis (MS). There weren't any treatments back then and I felt so helpless. She taught me to do "the twist" and we had our "shop til you drop" tradition every Black Friday. Over the years, I watched her struggle with her eyesight and lose feeling in her legs to the point that she eventutally couldn't walk. MS is unpredictable and affects each person differently, making this a very frustrating disease. Mom died in 1999 after 25 years of living with MS. I thought my fight against MS was done until I found friends being diagnosed with MS and I just couldn't sit back and do nothing. Nobody else should lose their mom (or dad, friend, son, daughter, etc.) to this crazy disease! Even kids are being diagnosed with it now.

There are now nine disease-modifying treatments and amazing progress is being made. In case you aren't familiar with scientific and medical research, it's important to know that researchers go where the dollars are. If we can't fund their research, they will move on to other projects. That's just the harsh reality. Please join me in supporting the National MS Society or another great charity during Love Utah Give Utah or find the giving day for your area (Arizona's was March 20). I challenge you to give $14 for the 14 years since I lost my mom to MS. There is a matching grant that will double at least the first $1,000 of donations to the Society, so your money will be extra powerful. If we get the most people donating, we could also earn some extra funds.  YOU will be helping to change the world!