Category Archives: Uncategorized

In Remembrance of Art

“The measure of a man is in the lives he’s touched.” – Ernie Banks

This past weekend we celebrated the life and memory of a “man of excellence”—our dear friend and longtime board member Arthur H. Rainey.

Arthur Art Rainey

Art was a proud Help Hope Live supporter and beloved friend

Art passed away peacefully at his home on December 17, 2017, surrounded by the love of his family. He was 74.

Family, friends, peers, and colleagues gathered Saturday to remember the man who touched their lives and thousands more through his nearly two decades of volunteer service for Help Hope Live. Art was remembered as “a man of excellence” and integrity, pragmatic and smart, who loved the law, his family, friends and community, and baseball.

Art joined the board of directors for Help Hope Live (then dba National Transplant Assistance Fund) in 2001. He was inspired to support our mission by his personal experience with transplantation—at the time, his wife, Nancy, was awaiting her second kidney transplant.

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Art was instrumental in the evolution of the board. He helped frame their strategic vision through his work on the Strategic Planning Committee; provided personal insight on how the organization should expand its services; helped set investment policies and internal controls through his role on the Finance Committee, and utilized his background as a corporate lawyer to amend the organization’s bylaws to support strategic growth.

Throughout his long tenure with Help Hope Live, Art was nominated for and served in several leadership roles, including vice chair (2005-2008) and chair (2008-2014). He was a familiar and friendly face at our annual fundraising events and a top supporter of our signature benefit, Live It Up!. Art and Nancy were also members of the Kolff Society, Help Hope Live’s most prestigious giving society named in honor of the generosity and commitment of the organization’s founders.

These words to Art from Stephanie McAlaine, a fellow Help Hope Live board member, express some of his immense personal and professional impact:

You have always lent such a great sense of statesmanship, precision, and fairness to your role on the board and it’s one that I strive to replicate and learn from.  

I appreciate the time you’ve given so easily to the Help Hope Live community – clients, staff and fellow board members.  One of the greatest gifts of life lies in being aware that we can leverage every encounter we have with a new person – through work, family, service, social – as an opportunity to learn more, become better, and grow. I thank you for being one of those people I’ve been lucky enough to encounter and learn from.

You’ve taught me, through your service, more about the role of generosity of spirit and giving back in a productive and thoughtful way, not just in a financial or task-oriented way.  

When so many stepped back, you stepped forward with this spirit and determination – thank you for laying down a path that others may follow in leadership and service.

Art Rainey ribbon cutting

Art cutting the ribbon at an Open House to commemorate our new headquarters in 2012.

As recently as September, Art was a member of the board, remaining active even after Nancy passed away in January 2017, just months shy of their 50th wedding anniversary.

Even in memory, Art and Nancy continue to support Help Hope Live today through bequests and others financial gifts we continue to receive in tribute to their lives. We are forever grateful for their commitment and compassion for our cause.


Memorial contributions may be made in Art’s honor to:

Help Hope Live

2 Radnor Corporate Center, Suite 100

100 Matsonford Road

Radnor, PA 19087

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.