The Power of Giving

PEN-POWERED The Power of Giving Activity Guide

PEN-Powered Activity Guide

Foreword

When you’re in the fight of your life, giving to yourself or others may feel like the furthest thing from your mind. But with this latest edition of Patient Empowerment Network’s PEN-Powered Activity Guide, we make the case that giving is not only empowering – it helps in healing yourself, your loved ones, and other patients around the world. Science tells us that the act of giving can stave off feelings of isolation and depression that are so common with a cancer diagnosis. I’m an activist and fundraiser by trade. During my cancer treatment, it was so important to stay engaged in my job and political volunteerism; it gave me something else to think about besides cancer, it helped me feel useful while I was otherwise pretty useless, and it kept me connected to the community I had cultivated over the years. I also benefitted from several nonprofits that provided psychosocial support during my treatment, and I am now volunteering for them to help empower everyone impacted by cancer and their care partners along their journey. Fortunately, there is a way to give to everyone – in the fundraising world, we talk about the trifecta of “time, talent, and treasure.” Approximately 63 million Americans — 25% of the adult population — volunteer their time, talents, and energy to make a difference. And of course, there is always treasure; according to Candid, 53% of all charities rely on contributions for the majority of their revenue. Most of that philanthropic support comes not from the very wealthy but instead from the middle class. The ways to give are endless. There are more than 10 million nonprofits and non-governmental organizations (NGOs) worldwide. According to Johns Hopkins University, if nonprofits were a country, they would have the 5th largest economy in the world. In this Activity Guide, we’ve outlined all the many ways to give, how to choose a charity, and how you can grow the great work of Patient Empowerment Network. Thank you for diving in, and we can’t wait to hear how this guide empowers you! Jessica Catlin Colon Cancer Empowerment Lead

What does giving mean to you and how do you give?

My way of giving time to myself means taking time to see my family as often as possible since they’ve been my rock through my cancer journey.

Carly Flumer

Thyroid Cancer Empowerment Lead

Cora Connor Giving to me means using my God-given talents to help others, be it time, possessions, attention, or caring. To quote Gandhi: "The best way to find yourself is to lose yourself in the service of others." RMC Empowerment Lead

Giving means helping others with – my time, my talents, and my support. I want to be there for others, and it makes me feel satisfied and happy knowing that I have helped in some way.

Andrea Winchell

Development Manager

Jessica Catlin Giving to me means using my talents, gifts, and luck in life to help those in need. I am a hopeless and fearless fundraiser, constantly seeking out great causes and candidates who deserve our time, talent, and treasure. Colon Cancer Empowerment Lead

Summer Golden Giving means helping others accomplish. MPN Empowerment Lead

PEN-Powered Activity Guide

Reagan LaBor Giving to me is a decision to support a cause with the goal to improve outcomes. Supporting through the act of giving allows initiatives to move forward toward success. I am able to give through making relationships and working with others to reach fundamental goals.

Partnerships and Programs Coordinator

Robin Barnes An opportunity to connect to something larger than myself, and to help bring about positive change. I give via monthly donations to charities, through volunteering my time, and by introducing others to causes which may resonate with them. Development Director For different situations, giving can be at a different level. With family members and loved ones, giving means everything with love, time, talent, and treasure. With cancer friends, giving mostly means time and talent. With cancer organizations, giving means time, talent, and treasure. Overall, I constantly give, but I also constantly receive, consciously and unconsciously, the love, passion, and support from

others. Christine Qiong Wu Lung Cancer Empowerment Lead

Giving means sharing myself, sharing my experiences and my knowledge, and helping others with my time and my money. I give with my smiles, my hugs, sending get-well cards or birthday cards, texting or phoning friends to keep in touch or just say hello. I give of my knowledge and my experience. I learned some sign language, so I can SIGN songs and benedictions at church or Vacation Bible School for the children. I give with my time. I play handbells at church and sing in the church choir. I advocate for cancer patients at PEN. I am a member of the LIFE Leadership group. I give my time to bless others in learning financial fitness and how to reduce their debt and save money. I give of my money. I donate to church, to many charities and cancer groups, to school PTA groups for friends' children, I buy Girl Scout cookies, school moneymaking offers like candy or nuts, and any

other worthwhile groups. Volleen White CLL Empowerment Lead

The Power of Giving: Time 5

The Power of Time and Giving Care to Yourself

My dad recently asked me how much longer this was going to go on when I told him I had another positive tumor marker show up in my lab results. I told him I don’t think it ends and that it’s just something I live with for the rest of my life. I’ve always wondered about the impact that cancer has had on my family, much less myself. I know that my prognosis is “good,” but that could change at any time. The concept of time seems to elude cancer patients like me. One day, we’re “normal,” and the next day we're superhuman, forced to live a life we didn’t choose, which is why self-care is so important. Below are some ways that I’ve chosen to take care of myself that may resonate with others. If you have other ways of caring for yourself that help “erase” the concept of time, even for just a little while, I’d love to read them in the comments below!

Spending time with family and caregivers

Strengthening my faith by attending church services

Getting in daily movement, such as a walk around the neighborhood or going to the gym Hanging out with a close friend, even if it’s once a week or every other week Listening to podcasts that educate, enlighten, and/or make me laugh

Doing things for others, such as volunteering with a local animal rescue Attending virtual cancer support groups or venting to a cancer buddy

Carly Flumer Thyroid Cancer Empowerment Lead

PEN-Powered Activity Guide

Roles Reversed: Taking Care of Your Care Partner

MPN Empowerment Leads Summer and Jeff are experiencing a bit of a change. Jeff is Summer’s care partner, however, the roles have been reversed. Jeff recently had a knee replacement and is unable to do many tasks he was doing before. Summer has jumped in to take care of Jeff but admits it’s harder than it looks. Watch and hear Summer’s comedic take on switching roles and stepping into the care partner role.

Want to connect with Jeff and Summer? Email them at question@powerfulpatients.org or text EMPOWER to (833) 213-6657.

How an MPN Patient Resumes Exercise After Time Off

MPN Network Managers Summer and Jeff talk about Summer’s journey to resuming exercise after a shingles diagnosis. Summer believes exercise is important and strongly helps with her myelofibrosis. She currently does a daily Zumba session and is working her way back up to 10,000 daily steps. We would encourage you to continue and be as active as your disease allows you to be.

PEN-Powered Activity Guide

The Power of Giving: Talent 9

PEN-Powered Activity Guide

Power of Giving #patientchat Top tweets from the October 28th Empowered #patientchat. The Empowered #patientchat is a monthly chat on Twitter where patients, care partners, and advocates come to learn from each other and to discuss topics of interest to empowered patients.

What does giving mean to you and how do you actively give?

What talents do you utilize when giving?

Who gives or gave to you that now inspires you to give to others?

Summer Golden's Comedy Show Fundraiser

On April 24, 2021, Summer Golden and Jeff Bushnell—beloved PEN Managers—hosted a virtual comedy show to benefit the Patient Empowerment Network featuring comedians who have journeyed through cancer.

In order of appearance:

Summer Golden Laura Hiltz Josie Leavitt Kat McCoy Karin Tausan Mickey Zeichick

PEN-Powered Activity Guide

Talents

Carly Flumer The talent I can believe I can harness when it comes to giving is my knowledge and passion for health literacy and how crucial it is to sustain a positive patient-provider relationship.

Robin Barnes Acts of service, compassion, teaching, and humility

Christine Qiong Wu I’m a good listener and supportive; I’m logical and can make good decisions; I’m persuasive if I want to be; On the other side, I’m not patient sometimes and lack of understanding, which I try to change.

Summer Golden Humor

Cora Connor The talent I believe I can harness when it comes to giving is that I'm a good listener, compassionate, and caring.

Andrea Winchell When it comes to giving, I am eager to help. I try to help in ways that I can give of my talents, so knowing the right support at the right time in the right way is key! I believe my talent is knowing what type of support is needed and when!

Reagan LaBor When giving, I harness my ability to build relationships to relate to others and work together for a common cause.

Volleen White I joined the Patient Empowerment Network as a Chronic Lymphocytic Leukemia Lead two years ago. I have talked to several CLL patients and shared my personal experiences with them. I answered their questions and discussed their concerns. I have referred them to information to help answer their additional questions. I have created stories and poetry to be used on the PEN website. I enjoy volunteering for such a helpful group that has caring as a priority.

Jessica Catlin My comfort with and talent at fundraising stems from my authenticity. I truly care what motivates people, I believe in connecting good people to good causes, and I only make asks that feel right for the person and the moment.

PEN-Powered Activity Guide

The Power of Giving: Treasure

Considerations of Giving Deciding Where to Give or Get

You are willing to donate yourself. The amount is less important than the act of personally supporting a cause before you ask others to join you in giving.

You have a personal connection.

This can be to a hospital that saved your life, a support organization that helped a loved one, a cause about which your network knows you to be extremely passionate, or any variation thereof. It helps you frame a compelling soundbite about why others should donate as well.

You know others interested in the cause or interested in learning more.

Fundraising is all about leveraging, cultivating, and stewarding relationships – people give to people – so starting with a circle of like- minded people sets you up for success!

You know several of the donors already giving to the organization.

The best prospect for additional money is someone who is already giving to the cause, and you can help maximize the capacity of each donor. Prompt donation thank you notes, public recognition for their donors and volunteers, and opportunities to engage with the organization’s work signal the nonprofit is disciplined in donor acquisition and retention – which makes your job as a fundraiser much easier. Look for signs that the organization treats donors and volunteers well. Generally, we give based on personal experiences or how we were taught. What is your charity doing that attracts you? If there is high turnover, beware, there are probably problems. Have they had problems with the board or with management? Look closely to make sure that the charity isn’t investing funds into things you do not agree with such as mining, alcohol, or tobacco. What is their Investment strategy?

PEN-Powered Activity Guide

Where is the money going?

Do your due diligence and make sure the money is actually being used the way you thought it would. Look for a reputable charity and find out if its mission matches what it's doing.

How much of your donations is going to events that you believe in?

You may be surprised to learn that in a lot of charities a large portion of their donor funds go to administration rather than the cause. See if you have a say in how your donation is being spent.

What Do You Want to Donate?

Review your assets. Make sure you aren’t giving up funds you may need later, especially if you’re considering donating irrevocable trust assets. Cash isn’t always king! Giving cash may not be the most efficient asset to donate. Perhaps you have life insurance that you no longer need or highly appreciated stock that has a hefty tax bill should you realize the gain. Consider your tax liabilities with the assets you plan to donate. Make sure you aren’t giving up funds you may need later, especially if you’re considering donating irrevocable trust assets. Can you direct the use of your donation? You may be able to direct your donation to certain causes within the charity such as research, education, or financial assistance, for example: Review their acceptance policies and procedures before gifting to make sure your funds won’t be restricted or unable to be accepted. Certain donations are complicated to turn into cash, such as real estate. What's Valuable: Remember, just because it's valuable to you, but it may not be for charity. In fact, it may not be easy to liquidate or manage and may cost more to handle than its fair market value. Seek Financial Assistance: Make sure you work with a reputable estate attorney or a financial planner when considering what and how to make your donation.

Philanthropy, Where and How to Give

Philanthropy is defined in the dictionary as the desire to promote the welfare of others, expressed specifically as the donation of money to good causes. The giver generally does not expect any remuneration in return, though some philanthropists find their name on sides of buildings, etc. Today, there are thousands of charities to which you can donate and support a cause that you find important and that aligns with your morals and interests. As a financial advisor, whenever I worked with individuals or couples, I always included philanthropy in our conversations. Being intentional about the positive impact you want to make through future donations ensures that both you and your chosen charity reap the positive benefits of your generosity. So, what constitutes a philanthropic donation? You don't have to be a Bill Gates or a Melinda French Gates to become a philanthropist. There are, however, steps you need to take to make sure you are participating in what you want, to make sure your donation will be directed as you intend, and that the charity's goals align with your own. Do your homework and don’t rush into donating. Not all charities and foundations are created equally. Free online resources such as Guidestar.org and Charitynavigator.org can help you to learn more about charities’ sources of income and expenses.

Donating to a charity can be as simple as writing out a check or using a credit card. This is the most common form of philanthropy in the world. No matter the size of your donation, you will be contributing valuable support to funding. All donations add up and can provide needed income to fund a charity's programs. You can also give through an online source of crowdfunding such as Gofundme.com. This way funds can also be aggregated. Online is still not the primary way that donors give, but it is the fastest-growing method. Some people find that setting up a private or family foundation is the way to go especially if they are high net-worth donors or families. You may be familiar with some of these such as the Rockefeller Foundation. This is a quite large foundation. However, most of the 80,000 private foundations are unstaffed and have less than $1 million in assets. The IRS has lots of rules for private foundations, including requiring that they give out a certain percentage of their assets each year. Even small charities will need good legal advice and a team to develop the objective, to research charities, and to develop procedures as to how to handle the finances. Another way of giving is through a Donor Advised Fund (DAF) This type of giving has grown exponentially. In 2020, grants from DAFs to qualified charities totaled an estimated $34 billion, up 27 percent from 2019. These charitable giving accounts are offered by a sponsoring organization that is designed to be accessible, simple, and less expensive alternatives to setting up a private foundation. You put your money in, let the sponsoring institution manage it, and then make a donation to the cause of your choice. There are also tax incentives through a DAF. People often overlook a very needed and common area of giving that provides zero out-of-pocket. And that is your time. Much-needed human skills are very valuable to charities. You can tailor your volunteering to your interests, lifestyle, and availability. Consider donating a car, boat, or even art. Charities may be in a position to accept these types of donations, which they will later sell and reinvest the earnings into their annual operations. As with all donations, you may be able to realize a tax benefit. One thing to note is that charities have policies around what type of donations they will accept. There are also procedures in place as to how the donated funds will be used, Some have restrictions on accessibility to funds while others may not. You can ask the charity of your choice about their gifting strategies and determine if they work for you.

PEN-Powered Activity Guide

Another area of giving is legacy giving. This is where your donation goes to the charity of your choice after your death. Many people find this works with them better, because it helps them plan for current living expense needs and then donate any leftover assets. Often, they are able to donate more than during their lifetime. Life Insurance, annuities, and retirement assets are often included in these types of legacy gifts. Additionally, real estate can be left to a charity, however, it’s a lot more cumbersome for charities to handle, and often smaller charities won’t accept gifts of real estate for that reason. So how do you decide? Whatever you do, don't give in-the-moment if you’re going to make a rash and quick decision. If an unsolicited plea for funds from a charity with which you’re unfamiliar but their appeal moves you, check to see if any non-profits to which you’re already donating are taking up the same cause. Use familiar charities for a new purpose. However you decide to give, leaving a gift to your favorite charity is truly a way to allow you to continue giving and making your mark even after your death. What a legacy!! So, before you go and open your wallet, make sure that the charity to which you plan to give will use your donation wisely. There are a number of organizations that research charities' financial health and their commitment to transparency and accountability. Sites such as guidestar.org, charitynavigator.org, charitywatch.org, and givewell.org are good places to start if you're looking to start donating to a charity for the first time. They do the legwork of combing through a charity's tax filings and governance documents so you won’t have to. Their findings are straightforward and unbiased. Now a big shout-out to all of you who give through your time, talents, and monetary giving. Charities and non-profits such as PEN and their stakeholders are grateful for you!

Diahanna Vallentine, BCPA Financial Empowerment Lead

Financial Fitness Workouts

It seems every day we’re being bombarded with ways to stay fit. There is always a new fitness program or a new type of fitness equipment that’s supposed to give us the best bodies we can have. But with those who are dealing with a chronic illness, fitness takes on a different meaning. Not only do we need to feel our best physically, but we also must be prepared in every aspect of our lives with our sight always set on our best possible treatment and our continuum of care. I thought this would be a great time to review four of the most impactful areas you can review, reallocate, and make the changes that are most appropriate for your specific circumstance. A good way to look at it is in the fall we make sure we perform maintenance checkups on our furnaces. We prepare our gardens and lawns for the upcoming spring, we check the exterior of homes for energy efficiency, and we do checkups on our cars to prepare them for the winter season. Unfortunately, few of us take the time to review the foundations of our financial lives that, in fact, dictate our ability to remain on treatment plans and to meet all of our financial obligations. It is my hope that everyone takes the opportunity to review at least these four areas that I’m covering in this article before the end of the year. Medicare First, the big one for a lot of us is Medicare. As you know, the Medicare season is almost upon us. And there are changes as there are every year.

PEN-Powered Activity Guide

If you are already a Medicare enrollee, this open enrollment period gives you the opportunity to make changes if needed. And if you have been enrolled for 12 months or less and you have a Medicare Advantage plan, you even have the opportunity to replace it with a Supplemental plan perhaps with a guarantee issue If you qualify. There may be a waiting period, but you may not be able to get in at a later date, and the coverage may be better for you. Also, if you have an HMO plan, you may be able to switch to a PPO for more plan flexibility. Review your Prescription formulary if there have been changes to your treatment. The worst thing you can do is to not review your Medicare options, as there are changes every year, and more plans may be available to you, and the cost may be better as well. Don’t assume that the cheaper the premium the better off you are. Review your total cost. That includes the premium, co-pays, deductibles, coinsurance, and the cost of your meds as well. Life Insurance Secondly, review your life insurance plan. Many people aren’t aware of the benefits that insurance offers such as accelerated benefit riders in the event, you need access to some cash or the option of taking a loan from your policy. Additionally, if you are still employed, on your next enrollment period with your employer, see if you can add or increase your life insurance amounts. Even if you plan to retire or terminate your employment next year or at a later date, the cost to take life insurance with your employer may be the only place you qualify without medical underwriting, and it’s much cheaper. Also, see if your employer offers supplemental life insurance that you can enroll in that may be portable at your termination from employment. Review your credit report to make sure there isn’t anything on it that’s incorrect. If you anticipate making a big purchase, this will really affect your interest rate. Monthly Statements Third, as a financial advisor, I found a lot of clients would not look at their monthly statements to see how their retirement accounts such as 401ks and investment accounts were doing. You are doing yourself a huge favor if you keep up with these no matter if the market is up or down. Speak to your financial advisor to make sure you’re taking advantage of growth, income- producing, and tax-efficient opportunities.

Financial Assistance And finally, don’t assume you won’t qualify for financial assistance. The cost of treatment is expensive and probably always will be. Talk to your doctor or social worker to help you uncover sources that can help you pay for co-pays, deductibles, coinsurance, and other needs. Do this before you find yourself in a financial crisis. Be proactive with understanding your illness and the anticipated change in treatments that may be available for you. Instead of waiting for spring cleaning, take the time to do a financial review now. Go into the new year in the best possible position you can. And then, like getting a check-up on your car, do the same for your financial future every year. After all, you are worth more than a car!!

Diahanna Vallentine, BCPA Financial Empowerment Lead

PEN-Powered Activity Guide

Empowered Wellness Challenge Recap

Thank you to everyone who participated in and supported the EMPOWERED Wellness Challenge! $14,500 was raised to develop free education resources for people impacted by cancer. If you would like to fundraise for PEN, here are some ways:

Host a peer-to-peer fundraiser on Facebook It’s easy to do, and Facebook automatically sends the donations you raise to Patient Empowerment Network. Click here for instructions. Donate proceeds from your sales or services Whether you’re teaching a workshop, selling your art, or earning revenue from any type of personal business, consider donating your proceeds to PEN. The opportunity to help cancer patients may attract new customers to your business! Donations can be made through PEN’s website, here, or by mail via the address found here. Group fundraisers Fundraising is a great team sport! Amplify your impact by enlisting friends, teammates, or colleagues in raising funds for PEN to benefit cancer patients. Donations can be directed to PEN’s website, here. Add Patient Empowerment Network to your wedding registry Getting married this year? In lieu of, or in addition to, traditional gifts, you can ask your friends and family to make gifts in your honor to the Patient Empowerment Network. You can provide them with this link for their online donations. Use AmazonSmile When shopping through AmazonSmile, Amazon will donate 0.5% of the purchase price of eligible products to the charitable organization of your choice. Available through your desktop browser and the Amazon App for Android and Apple.

PEN-Powered Activity Guide

Community Wellness: Nutrition

Benefits of Carbohydrates

Benefits of Protein

Carbohydrates are the primary source of energy for the body’s cells, tissues, and organs, particularly the brain. They are also a rich source of health-promoting fiber.

Proteins are the body’s workhorses providing structure and many other functions necessary for life. They play an important role in every cell in our bodies.

Benefits of Fats

Benefits of Plant-Based Diets

Fats are necessary and play an important role in storing energy, providing insulation and protection, and regulating and signaling functions throughout the body.

The benefits of a plant-based diet are correlated with reducing the risk of high blood pressure, cardiovascular disease, diabetes, obesity, and some cancers.

PEN-Powered Activity Guide

Be Empowered

Playlist

Podcasts

A list of the 37 most inspirational and motivational songs to help you feel empowered and to give you that much-needed boost to your day.

Empowered! How Do You Care for Someone With Cancer? CANCER BUZZ Podcast Triad Cancer Connection Podcast Frankly Speaking About Cancer

Listen Now

Connect With Us To receive personalized support from our Empowerment Leads. Whether you’re a cancer patient

or caring for someone who is, PEN’s Empowerment Leads will be here for you at every step of your journey.

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