Living on the frontlines

The Brantner family is another family that frequently has fundraisers. Words are never enough to thank them. I really wish I could have been that this one! You know wine (in moderation) is high in anti oxidants. They tell us these are good for our lungs. For years a number of HPSers have been ready and willing to volunteer for that clinical trial! Grin!!!!  Check out the cool wine bottle labels designed by Kylee, one of our younger HPSers. Her mom is the one that organized this great event. Read more about it here: https://www.hpsnetwork.org/en/news/2015-11-20/wine-lovers-sip-for-the-cure

I'so behind on so much!!! But, here's a quick blog shout out to the Klein family - Jeff and Amber. They are fundraising warriors! They have a fundraiser, it seems, like every month. They have some incredibly loyal friends that help. Thank you so much for all of your hard work!  One of the biggest obstacles the Network faces right now is funding. We are growing and our opportunities are growing, but our funds have to keep pace. Right now, even though the total funds raised for the last year is up, the budget demands to maintain our current programs has gone up more.  Thanks to Jeff and Amber, and to all of our fundraisers. You all are awesome! 

The fall and Christmas season are our biggest fundraising times of year. That is true for a lot of non-profits. Maybe people are in the giving spirit. Maybe they are thinking about tax deductions at the end of the year. Whatever it is, thank God for the donors, and thank God for the HPSers and supporters that help us with fundraisers! There will be no cure without all of you! The HPS Network is growing and evolving. The opportunities for us out there to get closer to treatments, and a cure, are so many that we can’t even take advantage of them all. But, our budget has to keep up. Soon we will be facing some hard choices. We are at a point that we need a full time nurse who is able to work on center recruitment and families who need help. Donna just can’t do it all. All of our part-time staff works for way, way, way under market value for their talents and positions. We are so lucky to have people so vested in our cause, and for whom making a difference is so important, that they are wi...

The HPS Network hosts an annual Christmas Concert fundraiser in Oyster Bay the first weekend in December. This year families with HPS from around the world can join the holiday fundraising efforts by signing up to host an HPS Christmas Concert event of their own!  A professional broadcast quality DVD of the concert in Oyster Bay will be produced and ready to ship out by Dec. 9th. The DVD can be played at a fundraising event anywhere during the holiday season. If you let the HPS Network know you are planning an event by Nov. 24th, we will put a shout out recognition to your group on the DVD.  In the past HPS families have done things such as:  • Host a Christmas tree decorating party while playing the concert. A basket for donations was simply placed at the front door.  • A children’s hot chocolate party. The DVD was played for the children while they sipped hot chocolate. The kids brought spare change to put in a jar at the event.  Make it easy and ...

A few weeks ago I was talking to a friend of mine. I was expressing my anxiety about all of the things ahead for the HPS Network, all of the doors opening up for us, but the need to have the funds to walk through those doors. While I can work on promoting funding the HPS Network generally, right now raising money for my medical needs is taking priority on a personal level. How do we help the HPS community understand what it takes to make these things happen? It’s a bigger challenge than you might think. Sometimes there is so much going on that it’s hard to take time to keep everyone in the loop, let alone help them really understand what it took to make things happen. We’d always rather be doing instead of telling everyone what we’ve done, yet if we don’t get better at explaining the process, how can we expect everyone to understand what it takes to keep the journey to the cure moving forward? Research doesn’t just happen by magic. It takes money to not only fund the actual research, b...

If you live in or near the Delaware area, join Amber Klein and her family and friends as they raise money for the HPS Network. Help them work towards funding the cure! Way to go Amber, Amber's dad, and their whole gang of supporters!!!! Learn more here: https://www.hpsnetwork.org/en/events/2014-06-28/jakes-wayback-burger-hps-benefit

Our friend Edwin was listed today for his new lungs! Edwin is someone I admire very much as he's worked so hard just to get listed. He relocated from Puerto Rico about a year ago, leaving behind friends and family. That's not easy to do when you are so ill and you know that if you don't get the lungs, you'll die. It's also been a huge financial strain.  Edwin moved to a place he didn't know in Minnesota. He as undergone a year of tests, surgeries to correct some issues that kept him from being a candidate, more tests, and more tests, and then more surgery. It hasn't been an easy road, but he's hung in there and been a tough cookie.  Now, he has his chance at a new birthday.  Here is his lung transplant fundraising page:  https://hpsnetwork.donortools.com/my/funds/51029-Ayuda-a-Edwin-a-obtener-sus-pulmones-Help-Edwin-get

A question I always get from members is, how can I volunteer to help the HPS Network? One way anyone with an internet connection can help is to be an online advocate. Today’s world is an online world. Getting noticed isn’t as much about the actual number of people affected by HPS as much as it is about how engaged those of us with HPS are online and on social media. We can exercise as much muscle as some of the “big charities” if we are better at mobilizing our population. You’d be surprised how some of the little things you can do every day will help the HPS Network. Here’s a list of ways you can help online. 1. Share the HPS Network Website, www.hpsnetwork.org . Search engines crawl the internet and rank Websites based on a number of factors. One of the factors is how many other places and Websites offer a link to the HPS Network site. If you have a blog, please mention the HPS Network Website whenever you can. List it on your blogroll. If you’re posting to twitter or facebook, pleas...

I know it's not quite Halloween, but when you plan events for the Christmas season, you've got to plan early. It's Christmas season in the HPS Network as we plan for the HPS Network Christmas Concert. I'll be posting much more about some of the exciting plans we have for the first time this year. One of them is that we will be auctioning off decorated Christmas trees at the concert. I've been collecting handmade ornaments of all different types. I want to give a shout out to The Yarn Shop and More in downtown Overland Park for helping by collecting ornaments from customers and staff. You all rock! Thank You. If you're an HPSer that would like to tell them thanks, please leave a comment on their facebook page at:  https://www.facebook.com/pages/Yarn-Shop-and-more/146911838655014

The HPS Network will be auctioning off three-foot decorated Christmas trees as part of our annual HPS Christmas Concert Benefit. We are in need of handmade ornaments to decorate the trees. If you’re crafty, and you’d like to help, send your creations to: One South Road, Oyster Bay, NY 11771. We need the decorations by Dec. 1st.

Goodsearch has made it easier for you to book travel reservations and earn money for the HPS Network at the same time. They have consolidated all of the travel-related merchants on goodshop into one place at: http://www.goodsearch.com/travel-category/coupons When you book with one of these merchants going through this website (and you're registered as supporting the HPS Network) a percentage of your purchase price is donated to the HPS Network. Merchants include many major hotel chains, as well as sites like Priceline, Expedia, Orbitz and Travelocity. If you're planning a trip, check it out! 

I want to give a shout out to the Rodriguez family. Despite being rained out last Saturday, they held a rummage sale for just three hours on Sunday and raised $240 for Hermansky-Pudlak Syndrome. If everyone on the registry just donated a dollar a week, we'd have $52,000 more a year for research. Can you imagine if just a fourth of those on the registry held a yard sale? We could make a lot of progress toward the cure with more small fundraisers like this. They DO make a difference. 

My friend Ashley has a birthday coming up. Instead of presents, she's asking for donations to the HPS Network. I know we have a lot of friends in common. Let's make Ashley's wish come true! http://www.causes.com/causes/26257-hermansky-pudlak-syndrome/actions/1713255

Sometimes blessings come from unexpected places. This year we had the opportunity to have not one, but three, booths at the Oyster Festival. The crew in New York sold the usual ribs and chicken etc. We also got to have a smoothie booth, and a booth to sell Dare to be Rare t-shirts! I've done the Oyster Festival, and I can personally tell you it's not an easy gig. It can be windy and cold and its lots and lots of hard work! Hats off to the troopers who helped us out!!!!! 

This year we had not one, but three, booths at the Oyster Festival. This one was selling Dare to be Rare t-shirts. Jasmine and her family did an awesome job with this!!!!!!! 

The Just Breathe Brunch, held Oct. 7th at Sazon, a Puerto Rican restaurant in Tribeca, New York, raised approximately $1,400 for the HPS Network. Brenda Lopez and Fran Gomez Moore co-chaired the planning committee for the fundraiser.  HPS supporters paid $60 for several hours of sangria, wine, appetizers and brunch. A raffle was also held at the event. Attendees won prizes such as: a Dare to be Rare t-shirt signed by Magic Johnson, quilts, hand-made scarves, designer sunglasses, Avon gift sets, gift cards and gift baskets with wine.  A big thank you to everyone who attended and helped with the event. 

Win your own copy of the documentary RARE (about Hermansky-Pudlak Syndrome) and help the HPS Network raise funds at the same time. Send the HPS Network five names and addresses for the Capital Campaign, and you’ll be entered in a drawing to win a copy of RARE and a Dare to be Rare t-shirt.  Send your names and addresses in batches of five to: info@hpsnetwork.org. Get them in by Nov. 1st.  The annual Capital Campaign invites people to make any size donation to the HPS Network. Funds go to support the work of the HPS Network including: patient education, medical outreach, conferences and research to help us one day find the cure. 

Heather Alvey, family and friends, will have a table at “Friday After Five”, an event that takes place every Friday night during the summer in Owensboro, Ky. The group plans to set up a table on May 25th and hopes to do additional Friday evenings through the summer.  They will be selling bracelets made out of pop tops, flower pens, lanyards and jewelry. The fundraiser will help support the 2nd Chediak-Higashi Syndrome Conference. 

The Hermansky-Pudlak Syndrome Network has partnered with the Community Assistance Program to offer a medication discount card to members, their family and friends. The discount card can be used at 80 percent of pharmacies across the country including Walgreens, CVS, RiteAid, Target, Walmart and many others. The card is NOT medical insurance. Instead, it offers discounts on medications for those who either do not have drug coverage, or who have gaps in their medical drug coverage. For example, if a drug is not in your insurance formulary, if you must meet a large deductable before coverage becomes effective, or if you’re in the Medicare donut hole, the discount card may be useful to save money. The card can be used by anyone, whether they have HPS or not. It can also be used over and over again.  Even pet medications can be purchased with the card. Every time the card is used, 75 cents will be donated to the HPS Network. Cards were mailed out to the HPS Network mem...