High Performing Charity

by Kimberly Goodrich, CFRE, Senior Director of Development

In our continued quest to show our donors the impact of their support, the Multiple Sclerosis Association of America (MSAA) has been working with the various charity watchdogs to ensure that we are doing our best to communicate that we are worthy of your donations, and that we are working to meet our mission. The most prominent charity watchdogs (GuideStar and Charity Navigator) are working to update and enhance their rating systems to focus less on ratios and more on the impact an organization is having on those who need its services.

America’s Charities is also recognizing those charities that meet the top standards of the different watchdog agencies through their High Performing Charities Initiative. This new program recognizes those nonprofits that have reached the highest levels of accountability, transparency and impact as set by the leading charity rating agencies.

MSAA is proud to announce that we have been recognized as a High Performing Charity by America’s Charities. To earn this distinction we have reached the highest levels as determined by each of the charity rating agencies.

1. We are a member of the BBB Wise Giving Alliance having met all 20 Standards for Charity Accountability in the areas of governance and oversight, measuring effectiveness, finances, fundraising, and informational materials.

2. We have achieved Gold level status with GuideStar for our commitment to transparency. This site also includes our current impact goals and progress toward those goals.

3. Charity Navigator has awarded MSAA with a three star rating based on their assessment of how efficiently we use resources to fulfill our mission, how well we have sustained our programs and services over time and our level of commitment to being accountable and transparent.

Last year your support led directly to helping more people improve their lives. Our toll-free Helpline assisted 6% more people compared to the previous year. We provided ongoing MRI assistance to 9% more people, and diagnostic MRI assistance to 70% more people than the year before. Thank you for being a part of the conversation over the last year and helping us to refine how we communicate our impact. And thank you for trusting MSAA to turn your support into services that directly improve the lives of those living with MS.

Support from our donors is always appreciated! If you would like to donate to MSAA, you may do so here.

 *About Kimberly

I am the Senior Director of Development at MSAA and have worked in the nonprofit arena for over 15 years. I love reading, running, theatre and the Green Bay Packers. I volunteer with the Disabled American Veterans teaching outdoor sports like skiing and kayaking to injured veterans and find that I receive much more from them than I am able to give.

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Happy Thanksgiving to the MS Community from MSAA!

The votes are in and we have a new MSAA Thanksgiving Card winner! The competition was a close one, but our big winner is…

Happy Thanksgiving

Pumpkin Floral Arrangement!

Coming in a close second place were cards showing a puppy and a kitten, a candle centerpiece, and a festive candy turkey with two small pumpkins. Sadly, our determined and colorful turkey was also defeated, but we’re sure he at least ruffled a few feathers in the process!

We would like to thank the more than 1,200 people who took part in this year’s fun election to select MSAA’s official Thanksgiving Card for 2014! MSAA’s winning online card “Pumpkin Floral Arrangement” is now available for you to select and send electronically to everyone you know. And since the other candidates received many votes as well, MSAA is offering all six cards for you to send!

Send a Thanksgiving eCard

This is a great way to send Thanksgiving greetings, while showing your support of MSAA, a leading resource for the entire MS community, improving lives today through vital services and support. At this time of giving thanks, we also want to express our sincere gratitude to the many individuals who have so generously contributed to support our vital mission.

Please note that MSAA’s offices are closed for the Thanksgiving holiday on Thursday, November 27th and Friday, November 28th. 

From all of us here at MSAA, please enjoy a safe and happy Thanksgiving!

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My MS Journey

By: Matt Cavallo

As an author and speaker, I have had the privilege of meeting people living with multiple sclerosis at MS events across the country. One of the ties that binds us is that we’re all different. Sure, we experience similar symptoms, whether they be vision, balance, memory related, or other, but each of our journeys is unique.

Whether you are just starting out as recently diagnosed person living with MS or are a seasoned traveler living with the disease for many years, there is a website available with resources to help assist you on that journey, My MS Journey.

My MS Journey organizes MS resources in a central location to help assist you with where you are at in your MS journey. The resources are categorized in an easy-to-use, searchable format. The following blog is step-by-step instruction of how to find information on the site.

5 Steps for Navigating My MS Journey

Let’s say for example that you were newly diagnosed and wanted a resource on how to talk to family and friends. My MS Journey can help using the following steps:

1. Enter the following link into your internet browser: http://mymsaa.org/journey/
2. Click on the picture or heading for your particular journey, in this case Just Starting Out:

MyMSJourney

3. Click on the section header to expand the section, and then click on the hyperlink to open the resource that you would like to select.

juststartingout 4. A new browser window will open up displaying the resource information that you were seeking.

includingfamilyandfriends 5. When you have finished accessing the information, you can either close the tab or click the My MS Journey tab to return to the main site.

Additional Functionality
While My MS Journey is categorized into sections with content and resources to assist you in each step of your journey, the home page of My MS Journey has additional functionality relevant to everyone living with MS.

A. Site Preferences – allows you to control your font size preferences, access keys, and print options to make the site more accessible for you.
B. Helpful links – these links provide tools and resources to help you better manage your MS, like the MS Resource Locator and Prescription Assistance Programs.
C. MS Trivia – impress your friends and family with how much you know about MS by participating in the trivia section. Once you make a selection, the right answer will be displayed along with how others answered.

The front page also allows you to share this site on social media. Sharing this site is important because of all the great resources provided by MSAA to help each one of us living with MS on our journey. Sharing resources that help each of us on our journey helps strengthen the MS community. Thank you for reading and I hope you take advantage of all the great resources that MSAA and My MS Journey have to offer!

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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The Overhead Solution

by Kimberly Goodrich, CFRE, Senior Director of Development

Several of my articles and posts have focused on the Overhead Myth – the commonly held belief that financial ratios are the sole indicator of a nonprofit’s performance. Over the last year, it has become widely agreed that stars and ratios do not clearly communicate a nonprofit’s impact or show that we are meeting our mission.

The Multiple Sclerosis Association of America has joined BBB Wise Giving Alliance, Charity Navigator and GuideStar in the pledge to end the Overhead Myth and move toward an Overhead Solution. Instead of focusing on the percentage of charity’s expenses that go to administrative and fundraising costs-commonly referred to as “overhead”-we need to focus on what really matters: trustworthiness and performance.

Last year, BBB Wise Giving Alliance, GuideStar, and Charity Navigator, published an open letter to the donors of America denouncing the use of the “overhead ratio” as the sole indicator of nonprofit performance. The letter, signed by all three organizations’ CEOs, marked the beginning of a campaign to correct the common misconception about the importance of a low overhead ratio.

A new open letter, published in October on www.overheadmyth.com, educates and encourages nonprofits to work towards an Overhead Solution. Specifically, the letter asks nonprofits to do three things, “(1) demonstrate ethical practice and share data about performance (2) manage towards results and understand your true costs and (3) help educate funders on the real costs of results.” The letter goes on to provide resources to help nonprofits in this critical endeavor to measure and report on what matters most.

Join us in spreading the word about this important topic. Nonprofits and their supporters are encouraged to learn from and share the latest Overhead Myth letter. We’d love to hear your thoughts and ideas. As always, please contact us if you have any questions at all.

Thank you for your support in this effort.

*About Kimberly

I am the Senior Director of Development at MSAA and have worked in the nonprofit arena for over 15 years. I love reading, running, theatre and the Green Bay Packers. I volunteer with the Disabled American Veterans teaching outdoor sports like skiing and kayaking to injured veterans and find that I receive much more from them than I am able to give.

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November 2014 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2014 Art Showcase - celebrating the work of artists affected by MS.

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.

November Artist of the Month:
Terry Densford – Jacksonville, FL

 Terry Densford - Blue Blue

About the Artist:

I was diagnosed with MS on July 4th, 2011 – an easy date to remember…my MS affects my right side, from my face down to my toes, making it hard to speak, write, and other things we sometimes take for granted…

MS is something that hovers over my head. Will it get worse? If it does, how will it affect my life? When is the next time I will have another flare up? Where will I be? What will I be doing? Is my hand just asleep, or is it my MS? All normal questions I believe anyone who struggles with MS, unfortunately, asks themselves on a regular basis. All that being said, I consider myself lucky. I feel fortunate that I was diagnosed early; that there are medical advances out there that have helped me keep this disease under control. I push fear aside so I can continue to move forward. I intend to live my life as if there isn’t anything hindering its quality.”

Read more

Be inspired – please send an online card featuring artwork by MS artist Terry Densford and spread awareness of MS and MSAA.

Calling All Artists with MS
It’s that time of year – MSAA is now accepting submissions for our 2015 Art Showcase! If you haven’t already done so, submit your best artwork by December 18th 2014 for a chance to be a part of next year’s Art Showcase.  

Submit your artwork for the 2015 MSAA Art Showcase.

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Happy Halloween 2014

Boo! From all of us here at MSAA, we’d like to wish the multiple sclerosis community a safe, happy, and fun-filled Halloween!

By Johnny Martin ecdl (Own work) [CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons

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Swim for MS: Give me a T-E-A-M!

With the start of the new school year and a new swim team season, MSAA’s Swim for MS has seen tremendous support. All over the country, swim teams are working together raising money to improve the lives of those living with MS.

Swim for MS encourages volunteers to create their own challenge, such as swimming laps or set distances over a chosen period of time while collecting donations for their personal fundraising goal. These challenges can be done individually or through group swims by teams of young and old alike. The NCMP Aquagirls, a Girls’ High School Swim Team from Iowa, created an event that would push them into swim shape early while creating awareness and raising funds. Their team captain, Rachel, challenged the team to swimming 50,000 total laps during the month of September. They collected pledges in August and September to raise over $1,000 for Swim for MS.

NCMP Aquagirls

NCMP Aquagirls

Lexie and team

Lexie & Team at her Swim for MS event

Volunteers also raise funds through a variety of unique one-day events such as pool parties, water-volleyball tournaments, and cannonball challenges. Unlike more traditional MS fundraising activities, Swim for MS allows individuals with MS at any stage in their journey – from the recently diagnosed to those with limited mobility – to benefit from water exercise and assist in raising donated funds for a vital cause. Lexi and her Swim for MS Team participated in a one day Swim for MS event held at her high school in Indianapolis and raised over $2,800 in September.

Just because October, November, and December are filled with back-to-back holiday parties, doesn’t mean you can’t organize a successful fundraiser! Stay on top of your game by encouraging a team effort for this fun event. Gather your Swim Team for a fundraising event everyone can do together. Show your school spirit by having a friendly competition between team colors, pick a side, and swim your heart out. Winning team gets bragging rights for the swim season!

On our SwimForMS.org website, you can read the profiles of some of our swimmers. They can inspire you and give you great ideas for your own Swim for MS challenge. We would like to thank everyone who has or will participate in Swim for MS!

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October 2014 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2014 Art Showcase - celebrating the work of artists affected by MS.

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.

October Artist of the Month:
Janice Paige – Bel Air, MD

 Janice Paige - Fall Fun

About the Artist:

“I am the mother of two grown sons and a wife of thirty-five years. I was a Special Educator for twenty-eight years…I obviously enjoy sketching and painting. I find it exciting and relaxing. 

I was diagnosed with relapsing-remitting multiple sclerosis in the winter of 1999 after a bout with the flu. The doctor that examined me indicated that my right side was weak and that something was going on with my brain. I was so afraid that I just went numb! I was referred to a neurologist who scheduled me for several MRI tests. I was also scheduled for a couple of spinal taps. However, I was not diagnosed for eight months.”

Read more

Be inspired – please send an online card featuring artwork by MS artist Janice Paige and spread awareness of MS and MSAA.

It’s also that time of year – MSAA will soon be accepting submissions for our 2015 Art Showcase! Be on the lookout later this month on mymsaa.org for more information on how to submit your work or sign up to receive MSAA email updates to be the first to know when the Art Showcase is open for submissions!

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Thank You Readers! My One Year MSAA Blog Anniversary

By Matt Cavallo: 

It was one year ago at this time, I started volunteering two blogs a month for MSAA. I was thinking about it today as my oldest son got ready for his first day of first grade. One of my first blogs was a back to school blog about parenting with MS, where I cried as I watched him go to school for the first time. I have shared many memorable blogs with MSAA since that time. From the one about a stranger “paying it forward” and buying my meal when he heard my MS story, to my recent birthday blog, each story is intended to provide inspiration and hope through my own journey.

My favorite part about writing the blog for MSAA is interacting with you, the readers. I have met so many wonderful people along this journey. Whether it has been through my personal website or social media, many of the readers of this blog have reached out to thank me for my contributions to this blog. I can’t tell you the tears of joy I experience from all of your feedback. It has been a pleasure sharing my stories here, and I it touches my heart that they are meaningful to you.

Thank you again for all the great feedback throughout the year. I promise to continue writing these personal blogs and sharing my stories and experience with you. Being able to connect with patients like myself makes it worth it. Together, we are making a difference in the lives impacted by MS. Take care and keep up the good fight!

Resource:
Parenting with MS – http://blog.mymsaa.org/parenting-with-ms/

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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Mining the Web for MS Resources

By: Matt Cavallo 

**Disclaimer: For any new or worsening MS symptoms, please contact your doctor immediately**

The internet is full of good (and not so good) information about multiple sclerosis. There are trusted sources, personal blogs, and social support groups regarding MS. Like everything else in life, when seeking more information about the disease, you must consider the source. The following blog will discuss some online traps that I have fallen into and how to avoid them.

In my mind, a good site for healthcare information should never promise a miracle or solicit patients for money. For example, I was following a very compelling Facebook thread posted in an MS support group linking to the story of a patient. I’m a sucker for a good story, so I started reading about this person and how they overcame all of their MS symptoms. At the bottom of the page, there was a link to their “miracle treatment,” and it brought me to a multi-level marketing website ad for some vitamins.

They drove me to the site with a good story, but their promise of a cure for MS was way off base. Multiple sclerosis is a chronic condition with no known cure, so to promise the people who click on this website a cure is false advertising. Be skeptical of buying any supplement that is either not prescribed to you by your doctor or that you have not discussed with your doctor prior to purchasing. This goes for assistive devices, as well. Before considering any assistive devices, contact your doctor or insurance company to see if the device is approved. You may get an idea from a website, but by going through your doctor and insurance company, you may find that the device, or a similar device, is covered.

As for trusted information, my favorite site is MSAA. In fact I like them so much, I am a contributing blogger for them. I found MSAA because I was looking for educational material to help explain MS to my young boys. What I found was a free picture book that I read to my boys that helped explain daddy’s condition. I found other resources, like their online Relapse Center. Every resource on the MSAA website is evidenced-based and peer- reviewed, so I know that the information is coming from a reliable source.

Another source for MS information that I trust is Healthine.com. Healthline takes complicated medical terms associated with MS and other chronic illnesses and puts them into slideshow format in words that are easy to understand. They also have great weekly columns from fellow MSAA blogger Jeri Burtchell and provide links to MS resources. MSAA and Healthline are my two personal favorite websites to find objective, clinically reviewed information about MS.

Social media is also a great place to find MS support groups and information about the disease. I belong to several social media support groups where members interact online. If you are going to engage in these activities, you must keep in mind personal biases. Participate in an online support group for support, but not for medical advice. These groups are great when you are having a bad day and want validation from your fellow MSers, but I have also seen solicitations or treatment recommendations based upon personal bias. Remember, you and your doctor should make all treatment decisions together, and what you read in an online forum may not be entirely accurate.

The internet is a great place to mine MS resources. There are trusted sources, like MSAA and Healthline, great personal MS blogs, and social media support groups. Just remember to be aware that some of these sites may be trying to solicit, not support you. Any research-based article will say something to the effect of “clinically reviewed” or have a clinical reviewer in the credits. Any website that promises you a cure is a red flag to stay away.

As a person living with MS, the best thing you can do is educate yourself to the disease and others’ experiences living with the disease. The internet is a great place to find resources, but make sure that you can trust the source. Let me know if you come across a good MS site that I haven’t mentioned. Happy mining!

MS Web Resources:
MSAA – http://www.mymsaa.org/
MSAA Relapse Resource Center – http://relapses.mymsaa.org/
Healthline Multiple Sclerosis Center – http://www.healthline.com/health/multiple-sclerosis

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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