Category Archives: Uncategorized

Live It Up! and Celebrate Hope with 3 Inspiring Stories

It’s that time of year again! On Thursday, October 19, join us at a new location, The Inn at Villanova University, from 6 p.m. to 9 p.m. for our 5th annual Live It Up! gala. You’ll enjoy great food, an open bar, silent and live auctions, raffles, our sought-after Wine Pull, and our 2017 Help, Hope, and Live Awards presentation.

Purchase tickets or sponsor our event at 501auctions.com/LiveItUp

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Our Help, Hope, and Live Awards recognize individuals who exemplify our work and mission. Let’s meet this year’s Help, Hope, and Live Award recipients!


Help Award for excellence in mentorship: Bill Soloway


Heart Recipient and Peer Mentor “Spins” to Win


Bill is dedicated to being a peer mentor for transplant candidates and fellow recipients

  • Bill is an avid cyclist and a skilled craftsman
  • Diagnosed with hypertrophic cardiomyopathy in the mid-90s
  • Put on the transplant waiting list for a new heart in 2015
  • Began fundraising for Help Hope Live as a part of the Mid-Atlantic Heart Transplant Fund in April 2015
  • Received “the call” for a heart transplant in June 2015
  • Was back on his bike 10 weeks later
  • Appeals to his community with community get-togethers like Pizza For a Purpose, plus unique events based around his love of cycling like a Spin for Soloway sponsored cycling marathon.
  • Dedicated peer mentor to transplant candidates—he has used his own personal experience to help dozens of patients by visiting the cardiac wards at HUP where received the gift of life
  • Spreads awareness about the importance of organ donation through his participation in the Gift of Life Donor Program and events like the Transplant Games

Bill preparing for the Transplant Games in 2016. Photo: Bucks County Courier Times


Hope Award for the gift of life: Joe Berardoni, Sr. and Joe Berardoni, Jr.


Father-Son Toy-Shop Owners Triumph with Transplantation


Joe, Sr. received a kidney from his son (right). Photo: Main Line Media News

  • Father and son ran a beloved local toy store for more than three decades
  • Joe Berardoni, Sr. was facing his second kidney transplant in 10 years
  • Joe Berardoni, Jr. was the first to call and offer to be tested to become a living kidney donor to save his father’s life
  • In 2012, Joe, Jr. donated his kidney to Joe, Sr.
  • Today, Joe, Jr. remains connected to the transplant community through his volunteer work, serving on several Help Hope Live committees

Joe, Jr. volunteered to help plan Live It Up! in 2016


Live Award, for inspiration after injury: Lauren Shevchek


Swimmer with Paralysis Commits to Recovery – and Helps Others Avoid Injury


  • Competitive youth swimmer
  • Sustained a spinal cord injury in a diving accident in 2013 at age 19
  • Lost all motion and sensation from the chest down; diagnosed with complete quadriplegia
  • Continues to regain feeling and mobility through her extreme dedication to rehabilitation (video above) and living a healthy and holistic lifestyle
  • Speaks publicly about the dangers of diving to reduce diving-related injuries, which are 100% preventable: “IF YOU CAN’T SEE THROUGH IT …  DON’T DIVE INTO IT!!!


Join us on October 19 at The Inn at Villanova University to meet these honorees in person along with Help Hope Live staff, board members, supporters, and friends. Let’s toast to another year of hope in action!

Touched by Transplant: My Childhood Friend Became My Kidney “Sister”

As she experienced end-stage renal failure, Frances V. Gilmore endured 10 hours of dialysis every night to stay alive. She began fundraising with Help Hope Live in May 2012 for a lifesaving kidney transplant. She is the fourth and final winner of our 2017 Touched by Transplant “New Life” Contest in recognition of April’s Donate Life Month.

Touched by Transplant 2017 Help Hope Live

“I am so honored by my living kidney donor, Sandi Hamilton-Spall.

I was on peritoneal dialysis for two years because of a family history of high blood pressure that affected my mom, my older brother, and myself. I was my mom’s caregiver in the 70s until she got a kidney transplant in ’79. Her body rejected the deceased-donor kidney in ’82. I lost my brother in 2013 [when] he stopped dialysis.

I got sick in 2010. Never in my life did I think I would be traveling down the same path my mom had. I remembered how hard it was for her.

When I joined the kidney transplant waiting list, I posted on social media and asked my friends if anyone had a good, healthy kidney they wanted to give me. My childhood friend, Sandi, who I had lost contact with for 20 years, came to Texas for a visit that year. She offered me her kidney.

Frances and Sandi

Sandi and Frances on the day of their transplant.

I received my beautiful kidney “Creedy” on September 11, 2012.

Sandi saved my life. I always considered her a sister growing up and she proved just how special of a person she is by stepping up and being there for me. She will always be my hero and ‘sister.’”

I love my living donor2

We loved hearing Frances’ Touched by Transplant story. Find updates and more on the Help Hope Live campaign page in honor of Frances at https://helphopelive.org/campaign/1370

One Year Later: The Legacy and Impact of Zeldathon Hope

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It’s been one year since Zeldathon Hope raised more than $250,000 for our nonprofit through a 150-hour Legend of Zelda charity gaming marathon. We are still experiencing the far-reaching impact of that support. Instead of just hearing about the impact from us in general terms, we’d like you to hear about some of the individuals who were directly affected by Zeldathon Hope in 2016.

Donations to Zeldathon Hope aided these individuals in a time of extreme need. Names have been changed to preserve confidentiality.


Zeldathon Hope Helped a Family to Support Chronically-Ill Children


Twelve-year old Annie was diagnosed with interstitial lung disease, a rare, chronic and progressive illness, with no identifiable cause. Her family learned that she would need a lung transplant to survive. Soon after, they found out that Annie’s twin sister, Erika, would also need to join the lung transplant waiting list.

The diagnoses were devastating for Annie’s family. With difficulty gaining and maintaining weight, Annie had to begin tube feeding to stay alive as she waited for a transplant. Less than one year after she was diagnosed, she became reliant on supplemental oxygen to breathe. Annie and her family had to endure regular inpatient hospital admissions, IV treatments, and consistent outpatient therapy to keep her alive.

The finances related to both Annie and Erika’s care soon became a crushing burden. Already coping with limited finances to support two children, the family had to cover out-of-pocket expenses including:

  • $1,500 monthly mortgage payments
  • $2,500 additional monthly expenses before added health care costs
  • $250 per month for medications just to keep Annie’s new lungs healthy post-transplant
  • Plus, the high cost of regular medical appointments, associated travel and temporary relocation expenses

Annie and Erika’s mother had to leave her job to care for her daughters; their father soon realized caring for his ill children would require him to miss work frequently, resulting in lost income that would further damage the family’s finances. How would this already struggling family cover the cost of care that would save their daughters’ lives?

That’s when Zeldathon Hope donations became a HelpHOPELive Emergency Grant, which covered vital but uninsured medical and related expenses for the family so that they could focus on caring for their precious twins. The support we received through the gaming marathon prevented this family falling into severe debt just to care for Annie and Erika.


Zeldathon Hope Kept Hope Alive for a Devoted Father


Christian was barely making ends meet for his family when he received a shocking diagnosis: end-stage kidney disease. To cope with his condition, Christian had to take 6 weeks off work, time he couldn’t afford as he strove to provide for his 3-year-old and 6-year-old children.

As he fought to stay alive long enough to receive a kidney transplant, Christian was approved for disability benefits that amounted to just half of his regular salary. He received a lifesaving transplant, but found himself crushed under the weight of out-of-pocket costs to keep his new kidney healthy, including:

  • $900 monthly rent payments
  • A monthly insurance premium over $180
  • Monthly non-medical but related expenses exceeding $2,000
  •  $80 per month in vital anti-rejection medications
  • Regular travel and co-pays for doctor visits

Zeldathon Hope donations made possible an emergency grant to help Christian offset uninsured costs. Without the generosity of the gaming community, Christian may not have been able to afford post-transplant medications that have kept his kidney viable and his health stable.

Christian’s goal today? To become healthy enough to return to work so he can personally provide for his family.


Zeldathon Hope Relieved the Burden for a Selfless Living Donor


Takesha’s close friend needed a lifesaving transplant. Takesha made the selfless decision to give the gift of life to her friend. While her living donation was successful and her friend was able to unlock a healthier life post-transplant, Takesha experienced unexpected health complications related to her donation.

Though Takesha’s medical expenses were covered by her friend’s medical insurance, she was forced to miss multiple days of work in order to attend follow-up appointments to manage her post-donation complications. She found herself trapped in dire financial circumstances as a result of her compassionate decision.

“She is a very caring and sweet person,” wrote Takesha’s medical provider about her household. “They are running out of money. She has had lost wages due to her gift of life.”

That’s when Zeldathon Hope donations covered the cost of Takesha’s rent payments, making it possible for her to attend vital medical appointments and take care of herself without worrying about how she would make ends meet. The success of Zeldathon Hope made it possible for Takesha’s selfless choice not to result in a massive financial crisis.


Zeldathon Hope Made Post-Transplant Care Possible for a “Desperate” Recipient


Maya was looking forward to her new life post-transplant when she was hit with shocking news: in order to discharge from the hospital, she would have to cover an extremely expensive new prescription for one month. This medication would be mandatory for Maya to take in addition to the pricey anti-rejection medications she would already be required to take for the rest of her life.

With a monthly income of $2,100, Maya would be responsible for the out-of-pocket cost of 15 different medications per month! Her financial commitment was skyrocketing:

  • Monthly insurance premium exceeding $250
  • Monthly non-medical expenses over $2,000

Maya described herself as “desperate” as she faced the uncertainties of life after transplant with limited financial support. That’s when Zeldathon Hope donations became an emergency grant to save Maya’s life, helping to cover Maya’s mortgage payments so she could discharge from the hospital and maintain her health post-transplant.

Without the assistance of Zeldathon Hope, Maya would not have been able to afford mandatory post-transplant care. Maya says she is “beyond grateful” for your life-giving assistance.


We are exceptionally grateful for Zeldathon Hope and for the efforts made in the year that followed to raise funds and awareness for HelpHOPELive.


The support we received continues to provide emergency assistance grants to patients and families for whom our fundraising program is not an option, AND to spread our mission to a larger population of individuals who may need our help

No one should have to forgo lifesaving medical care or fall into bankruptcy because of their out-of-pocket medical expenses. Without the love and support of the Zeldathon community, Annie, Christian, Takesha and Maya may not have been able to survive their medical crises. Your donation may have saved a life.

From all of us, thank you for your support. Please share this post with anyone who may enjoy reading about the impact of last year’s unforgettable Zeldathon Hope charity experience.

If you would like to share your story as a Zeldathon Hope donor or participant, or tell us a little bit about why you chose to support Zeldathon Hope, please leave us a comment. We would love to hear from you.

To all of our friends at Zeldathon: we wish you great success as you kick off Day 1 of this year’s winter marathon Zeldathon Cures to benefit St. Jude Children’s Research Hospital.

How To Ensure That Your Next Donation Goes To A Trustworthy Charity

With the end of the year near, we are all thinking of ways to use our time and money to support meaningful charitable causes. No matter which philanthropic cause moves you to give, you want to feel completely confident that your donation will make an impact and benefit an organization that is legitimate, accountable and worthy.

How can you ensure that your next donation goes to a trustworthy nonprofit? We engaged Sandra Miniutti, the VP of marketing for the independent charity watchdog organization Charity Navigator, to get some answers.


Tell us about Charity Navigator.


cn_logo_main250x83We’ve developed an objective methodology that enables us to rate all different types of charities. Our system is designed so that an individual analyst’s subjective opinion can’t influence a charity’s rating with us. Our system is designed so that a charity cannot opt out of being rated by Charity Navigator. We can provide a richer analysis if a charity is willing to participate in the evaluation process.

You can use our advanced search to discover more about a particular nonprofit. We also offer tips for donors so they can make the right donation decision.

 


What’s the best way to use Charity Navigator to make a better giving decision?


holiday-giving-guide

  1. Confirm that the organization is a bona fide charity, or a 501(c)(3) public charity. If an organization has this designation, your gift to the charity is eligible for a tax deduction.
  2. Review the Charity Navigator rating for that charity. We rate charities on a 0- to 4-star scale with 4 stars being the highest rating.
  3. Support charities with 3 or 4 stars. If you find a charity you like with a 2-star rating, call to learn more about what’s going on with the organization and what its plans are to improve.
  4. Do not support 1-star or 0-star charities. Look for another charity that does similar work with a higher Charity Navigator rating.
  5. If the charity is on the Donor Advisory list, take the time to read about why we’ve placed it on that list. Consider pausing your donations to the organization until it resolves the issues at hand.
  6. If a charity is public but has not yet been rated by Charity Navigator, follow the steps we provide to conduct your own review of the charity before you donate.

What should donors know about HelpHOPELive?


Donors to HelpHOPELive should feel confident that they are supporting an efficient and ethical charity. HelpHOPELive has earned 13 consecutive 4-star ratings from Charity Navigator, and is nationally ranked in the Top 1 % of all charities evaluated. View the ratings here.

4-star-rating-certificate-1


What does Charity Navigator consider to help inform donors?


cn3-0-logoOur rating system examines two broad areas of a charity’s performance: Financial Health and Accountability & Transparency. Our ratings show givers how efficiently we believe a charity will use their support today, how well it has sustained its programs and services over time, and its level of commitment to good governance, best practices and openness with information. In the not-too-distant future, we also plan to rate charities’ reporting of their Charity Navigator results.


Why is it important to find out more about a nonprofit before you donate?


While the number of charities has grown to over 1 million, the level of funding flowing into the nonprofit sector hasn’t grown at a comparable rate.

As such, it is every donor’s responsibility to ensure that their dollars are going to efficient, effective and ethical charities. We can’t afford to have precious resources wasted on ineffective or fraudulent organizations if we want to tackle the world’s most pressing problems.


What are some of the warning sings that a nonprofit may not be a good choice to receive a donation?


allthreelevelsofconcern

There are several red flags that include, but are not limited to:

Organizations that spend very little on their charitable mission. The 8,000 charities that we rate tend to be larger, established charities. The vast majority spend at least 75% of their budget on their programs and services (HelpHOPELive spends more than 88% on programs and services). That percentage may run legitimately lower for a new or small charity or one that is intentionally investing in its infrastructure. But if the percentage is significantly lower, we would encourage a donor to ask questions or look elsewhere before making a contribution. Our rating system gives zero points for that metric to charities that spend less than 50% of their budget on their mission.

Organizations that do not have a diverse board of directors providing oversight. In our rating system, we look for each charity to maintain at least five independent, voting board members. Avoid charities where, for example, the CEO is reporting solely to family members. That can open the door to unethical behavior.

Organizations that use high pressure techniques to solicit donations. Well-run charities are willing and eager to share information about their work and they will not try to pressure you to give on the spot as you are learning about their mission.


How can we get started right now searching for worthwhile causes to support?


Go to charitynavigator.org and look for the Charity Search box. Type in the name of the charity, or search by keyword or location.

Share this post with family members and friends who want to make a positive difference this holiday season or throughout the year

Free HelpHOPELive Graphics for #GivingTuesday November 29

On Tuesday, November 29, 2016, something incredible will happen. People around the world will come together to donate, share, volunteer and celebrate the power of giving back. It’s called #GivingTuesday, and it’s your opportunity to engage more supporters than ever before to boost donations to your HelpHOPELive fundraising campaign!

On November 29 only, HelpHOPELive will cover the credit card fee for ALL donations made in honor of all HelpHOPELive clients at helphopelive.org.

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Snag and share these graphics before and during #GivingTuesday! Just right click or double tap and choose Save. Then share on your favorite social media sites! Tag us @helphopeliveorg for extra support!

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give-at-helphopelive-org

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Questions? Get in touch with your HelpHOPELive Fundraising Coordinator today to find out how you can plan for #GivingTuesday 2016.

 

 

My Life As A Father And Grandfather Who Needs A Transplant

Kappy Pease is a father and grandfather living with a severe lung disease. He is on the waiting list for a lifesaving double lung transplant. We asked Kappy about his perspective on balancing fatherhood and the challenges of life on the transplant waiting list.


Why Fundraising Works For Us


Since my first visit to the hospital where a social worker suggested we begin a fundraiser to help us with the costs of transplantation, my family has come together and has been very helpful in their efforts to work with HelpHOPELive. So far, because of their dedication, we have been very successful.

Each of my kids has taken time out of their busy life to take some of the burden off of my wife, Theresa, and I, both physically and emotionally. They have each stepped up in their own way and have been very supportive. I know I could not do this without all of them.

Kappy Pease HelpHOPELive

“I could not do this without all of them.”

Although my insurance will cover most of the transplant procedure, there are many hidden and unexpected costs not covered. The expenses begin long before the procedure takes place and they last a lifetime, including travel, lodging, parking and food during countless hospital visits and the unpaid time off that my wife will take in order to care for me after the procedure. Most of all, fundraising will help contribute to the cost of the (antirejection) medications I will need to take for the rest of my life after the transplant.

I have found that much of the support I receive comes from old friends who have learned about my time of need through social media and our HelpHOPELive campaign. Working with HelpHOPELive has been a very positive experience. Their knowledge and support has been very helpful to someone who had no prior experience with fundraising.

Kappy Pease HelpHOPELive

HelpHOPELive provided custom fundraising materials and more.


How My Family Supports Me


It has been very rewarding to watch my kids grow and begin to start their own families. I am very proud to say that they have each become very successful in their own way. I’m humbled by the compliments I have received about my kids. The way they have stepped up for me during this time makes me feel like my wife and I raised an amazing family.

Kappy Pease HelpHOPELive

Family members “have stepped up for me during this time.”

At this point in my life, I feel closer to my kids than ever before. Before my diagnosis, I worked very long hours that caused me to miss out on a lot of my five kids’ daily lives and activities. I especially missed getting to watch their sports games, because sports are something that are very special to both me and my kids.

I feel that the physical limitations of my disease have been more challenging as a grandfather than as a father. My kids are adults now, and they need me more as an advisor and a part of their emotional support system.

Kappy Pease HelpHOPELive

A transplant will help Kappy spend more quality time with his grandkids.

Since my diagnosis, I have been given the chance to spend more time with all of them and grow closer to them; however, because of my disease, there are also many things we still cannot do together. The hardest part is my limited ability to play with my very young grandchildren. Once I get the transplant, I will hopefully be able to do many things that I have missed doing for the last 10 years. That includes golfing, hunting, fishing, playing with my grandkids and taking long walks with my wife.

My advice for a new father is, enjoy every moment because they grow up way too fast.

Kappy Pease HelpHOPELive

“Enjoy every moment” Kappy advises new fathers.


Learn more about Kappy or donate in his honor at helphopelive.org. If you know a father who needs help fundraising for a transplant, reach out to us today to learn how you can help.

Has Fundraising Helped You? You Can Pay It Forward!

Has fundraising had a positive impact on your life? You have an opportunity to give back to your community and support other families facing a medical crisis. Last week, we featured Danielle Bailey, who has helped several local families kick-start their fundraising efforts with HelpHOPELive. This week, we feature five tried-and-true ways to start making a difference today.

pay it forward


…supporting families who are going through a similar situation.


You can help families navigate through the same challenges you’ve overcome. As heart transplant recipient Rick Brittell explains, “Before I got my heart, I was so tired of being away from home and isolated. Then my social worker reached out and asked if [my wife and I] would be willing to meet with a patient at the hospital who was facing a similar situation. We began to focus on supporting others. We started a support group in the local area that was open to lung and heart transplant candidates and recipients, caregivers and people who were grieving.”

HelpHOPELive Pay It Forward

You can be a vital source of support for another family.

Rick notes that this kind of support can make a tangible difference in someone’s life: “The doctors have said to us, ’You don’t know how much of a difference you have made.’ They even told us that people are being released 3-4 days earlier than average now that we are there to provide support!


…referring families to HelpHOPELive for nonprofit fundraising support.


Do you know someone who needs help fundraising for medical and related expenses? Help him or her understand how HelpHOPELive can help. Point other families in need to helphopelive.org for more information. If you would like additional resources to share with others who may need our help, contact us today.

Diane Maxwell, wife of transplant recipient Mark Maxwell, explains how she helped another family find us: “I met Jude Jamieson through a woman’s retreat, where I learned that she also had a husband with a chronic illness in need of a transplant. I encouraged her to contact HelpHOPELive and start a fundraising campaign since her husband’s transplant hospital required a $5,000 account balance at minimum to list a patient for transplant. They were able to raise the funds through the summer and fall. Her husband went into acute liver failure, but less than a week later, he had a new liver thanks to their fundraising efforts. All I did was be bold enough to suggest she contact HelpHOPELive. You guys did the rest, right on time.”

HelpHOPELive Pay It Forward

Diane referred Kevin and family to HelpHOPELive for fundraising help


…supporting HelpHOPELive’s mission.


Every donation to our nonprofit helps families across the country receive tangible and compassionate fundraising support. You know firsthand how important that support can be when a medical crisis strikes. Become a monthly contributor to HelpHOPELive today and begin paying it forward to families who need our help to combat the high cost of medical and related care.

HelpHOPELive Pay It Forward

Want to see the true impact of your gift? Keep up with stories of hope on our Blog and on our website, or get a handpicked selection of tips and stories in your inbox every month!


…using your next fundraiser to serve the community.


As Heidi Anderson, mother of 2-year-old transplant recipient Deanna, explains, “Deanna lived in the hospital for more than three months before her transplant. We were visited by many people during that time, including volunteers who would bring her toys and gifts. It truly touched my heart. I see so many children at the hospital now who really need a smile.” Heidi knew a fundraiser in honor of Deanna could provide a way to give back, so she “decided to collect toys for kids at the hospital through a toy drive as part of one of Deanna’s Valentine’s Day HelpHOPELive fundraisers.”

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The toy collection was a huge success, says Heidi: “So many people brought toys! It made me incredibly happy! We are still collecting today.


…donating in honor of a particular family.


After getting her own fundraising campaign rolling, LAM fighter and transplant candidate Nicole Seefeldt found a way to pay it forward. “I met Alyssa Mebs while I was getting my transplant evaluation,” says Nicole. “We just started talking one night and we became fast friends. Once I saw that Alyssa was fundraising for a transplant, I thought, what can I do to help her? I knew I was going to meet my first fundraising goal…so I donated what I had to give in her honor.”

HelpHOPELive Pay It Forward

Nicole, left, made a donation to HelpHOPELive in honor of Alyssa

Today, when Nicole asks for donations or donates to a fellow HelpHOPELive client, she keeps this advice in mind: “It’s not the dollar amount you give, it’s that you give at all. Not everybody has a lot of money, but since it’s tax-deductible, every penny is something that they can use that compounds the effect. I never want to put an amount that people have to give. I just encourage them to give what they can.”


You don’t have to have it all to give back.


As Heidi Anderson explains, “Giving back is something we should all consider. Whether you do it with a toy drive or something else, paying it forward is about giving love and kindness to others who need it most.”

Today, consider how you can give back to the community that has given you so much. If you have a great idea for giving back, contact us and we may feature your campaign in an upcoming Blog post!