Customize your page with information about why you are fundraising for PHAR – how steps toward a cure can improve the life of patients affected by PH.
Set a fundraising goal and add a photo of yourself or your honoree.
Most importantly, don’t forget to send your request out. The Manage Campaign area supports easily connecting to your Facebook, Google, Twitter, Linked In, and E-mail accounts.
MAKE THE FIRST DONATION
Start your fundraising efforts off strong and lead by example: Making the first donation sets the
precedent for others to give.
Any amount is a great start. Your donation puts dollars on your page immediately and seeing your name next to those dollars reminds people that you are passionate about this cause and truly helping PHAR.
Using your social media and networking platforms are a great way to spread the word – think about your Facebook/Twitter/Instagram followers and be sure to directly email your networks with a direct link to your fundraising page.
When you are posting, be sure to share why you are walking and your networks will see your messages and remember your e-mail asking them to contribute.
Your family, coworkers and friends outside your inner circle all have the potential to give. Remind them that any amount is appreciated.
CORPORATE PARTICIPANTS AND MATCHING GIFTS
Ask your company if they will support you in forming a corporate team.
Ask your company to match your funds raised. Many companies have an employee match program that can possibly double your efforts. You can also ask your employer if your fundraiser can be highlighted in their next newsletter!
Remember to approach community groups, sports leagues, local businesses to participate and local companies with whom you do business (your grocery store, hair salon, etc.).
THANK YOUR DONORS
When you receive donations from your social network, thank them publicly by tagging them in a post.
Send out personal emails to thank your donors and keep them updated on your fundraising.
Sharing a recent photo with an update on your fundraising is a great way to show them their donation was both impactful and meaningful to you.Be proud of what you are accomplishing!
A. Create your own fundraising page – www.GOPHAR.org. Once your page is finished, start contacting family, friends and colleagues to sponsor you as you take steps to “GO PHAR Research”. See our fundraising tips, inspiration and ideas as we go on this journey together.
Q. Can I form a team?
A. Yes, and we encourage it! This fundraiser is all about the community combining efforts to “GO PHAR” together! Any individual team member who registers and pledges to raise their own $100 or more also receives the Withings® GO Activity Tracker. It’s as simple as that!
Q. Do I need my doctor’s permission to participate?
A. While PHA will not be requiring documentation of your doctor’s permission for you to participate, we caution you as with all physical activity, to consult your physician before beginning this initiative. During the registration process you will be asked to sign a waiver that places sole responsibility for your physical activity on you, and releases PHA and Withings® from any liability.
You may wish to share with your doctor that PHA’s Scientific Leadership Council, comprised of 28 global leaders in the field of pulmonary hypertension, is supporting this event. Read their statement letter HERE.
Q. Do I have to take a certain number of steps?
A. You do not have to take a certain number of steps or walk a certain distance; you are simply asking for contributions to support PHAR and the community by having friends and family support you! Our success is measured by the amount of contributions we raise; not how many steps we take.
Q. Why should I track my steps?
A. Let’s have some fun using the Withings® GO together!
PHA will keep track of all steps taken as one community – and your steps, no matter how many, count towards our community total! We will not keep track of your individual steps, only the combined total of all participants. Be sure to follow our journey on social media and the website as we GO PHAR Research! Click Here to have your steps counted (anonymously).
Q. How long does the event last?
A. The kick-off began at PHA’s 2016 International PH Conference and Scientific Sessions on June 15, 2016 and will continue until October 31, 2016. You may register and begin fundraising at any time during the event.
Q. How PHAR will the PH Community go together?
A. That’s up to everyone who participates! Here are a few milestones we can hit: There are 2,983 miles from Boston to Los Angeles – that’s approximately 7,457,500 steps. How long will it take us to reach that number? It took Lewis & Clark 2 ½ years to walk 8,000 miles – how long will it take us to record 20,000,000 steps? Remember, the more participants we have, the less time it will take us to reach these milestones as well as raise money for the registry!
Q. What happens if my battery stops working?
A. Replacement is as simple as going to a store, purchasing a replacement (Battery CR2032) and opening the back of the watch and inserting the new one.
Q. What should I do if I receive cash donations?
A. Please convert any cash donations into a check made payable to PHA. In the memo section write GO PHAR. Mail to: PHA, Attn. Bob Gray, 801 Roeder Road, Ste. 1000, Silver Spring, MD 20910. Please be sure to include a note identifying who is to receive credit for the contribution.
Q. Who will see my steps/activity?
A. Your information is private, and only you will be able to view your activity. Neither PHA or your physician has access to your personal information. We hope you choose to have your steps included with our PH Community, so please remember they are sent anonymously.
What if I raise more than $100? That would be wonderful! And we’d like to reward you for your efforts based on the final amount of contributions you raise by October 31, 2016! Prizes are not cumulative, for example, if you raise between $1,000-$1,999 by October 31st, you will receive the GO PHAR Research t-shirt and the Withings® Activité Steel activity watch.
$100: Upon pledging to raise $100, you’ll receive the Withings ®Go activity and sleep tracker. It’s fun and easy-to-use. Already honored with numerous design awards, Go features an always-on E InkTM screen and a battery that lasts up to 8 months and seamless pairing with their highly-rated Health Mate app. Simple on the outside, highly-advanced on the inside: Withings ®Go is perfect for anyone ready to give activity tracking a go. Withings Go color choice not guaranteed. While supplies last.
$150-$249: Upon raising this level, in addition to the Go, you will also qualify to receive the official GO PHAR Research t-shirt. While supplies last.
$250-$499: When you raise this level, you will receive the Go PHAR Research t-shirt and the Withings Pulse Ox. Whatever your fitness level or style, the Withings Pulse Ox can help you be more active and improve your health. During the day it captures steps, distance walked, elevation climbed and calories burned. At night, it monitors your sleep cycles. And when asked, it measures your heart rate and blood oxygen level. With this data at hand, Pulse Ox empowers you to make informed choices. While supplies last.
$500-$999: When you raise this level, you receive the GO PHAR Research t-shirt and the Withings® Activité POP. Activité Pop doesn't just look good. It features a lightweight design, a PVD-coated watch case and a smooth silicone watch strap for ultimate comfort and durability. Activité Pop helps you embrace healthy habits while complementing your style. COLORS THAT POP! While supplies last.
$1,000-$1,999: When you raise this level, you receive the GO PHAR Research t-shirt and the Withings® Activité Steel. There’s no charging and no button to press — Activité Steel automatically tracks everything via our patented Connected Movement™ Technology. While supplies last.
$2,000-$2,999: When you raise this level, you receive the GO PHAR Research t-shirt and the Activité Sapphire. Withings® Activité Sapphire is a game changer: A stunning Swiss-made watch that combines time and activity tracking. While supplies last.
$3,000, or more: When you raise $3,000 or more, you receive the GO PHAR Research t-shirt and the Withings® Activité Sapphire AND latest innovation, Body Cardio, a vital new heart health metric home, so that anyone can keep tabs on their cardiovascular health and be empowered to take action to improve it. With expanded full body composition, exclusive cardiovascular health insights, and a seamless connection to the Health Mate app, Body Cardio is the world's most advanced scale (See description for Activité Sapphire above). While supplies last.
Prizes are for individuals only, not team totals. Event prizes awarded based on fundraising achievement as of October 31, 2016, 11:59:59pm EST.
For full product descriptions and color options for prizes click here.
Many of the past PH registries were privately funded to answer specific questions. PHAR, with contributions from the PH Community and with information from the PHCC accredited centers, will track diagnostic and treatment patterns at a national level, ultimately demonstrating quality improvement for the care of PH patients at these institutions.
PHAR will have the capacity to unveil current practice patterns, trends and evaluate patient outcomes with new and different types of combination treatments, where there is limited information. We believe it will especially benefit children with PH (where we lack studies, trials and FDA approvals.
In addition to PHA’s annual publications relaying key findings, any stakeholder (physician, researcher, or group) is eligible to ask questions of PHAR to support and guide research. PHAR will provide information that may allow those affected by PH to realize a positive life changing experience, and researchers the opportunity to develop new understanding of the disease and accelerate new research opportunities.
PHAR is the key to helping to answer research questions with real world data, that will help advance care and quality of life for people living with PH. It is also the key to accelerating research in the United States.
This event was inspired by PH patient Diane Ramirez who walked a personal goal of nearly 100 miles last October in support of the Registry!
Regardless of your stamina as a pulmonary hypertension patient, family member, or friend, YOU can join PHA in raising funds for PHAR!
EVERY REGISTRANT pledging to raise a minimum of $100 will receive a Withings “GO” Activity Tracker (retail value $79.95) free of charge.
As the walk is virtual, you can work toward your own activity goal - on your schedule. You do not have to take a certain number of steps or walk a certain distance. Our success is measured by how much we can raise; not how many steps we take.
Entry: Registration for this event is open to everyone. For pulmonary hypertension patients, PHA will not be requiring documentation of your doctor’s permission for you to participate. We caution you as with all physical activity, to consult your physician before beginning this initiative to set activity goals yourself. These can be programmed into the "App" and tracked daily. During the registration process you will be asked to sign a waiver that places sole responsibility for your physical activity on you, and releases PHA from any liability. The PHA Scientific Leadership Counsel supports this event. Read their letter.