Event Information
Event Details/Course Map
The New England Connection for Phenylketonuria (PKU) and Allied Disorders (NECPAD) is hosting its fifth 5K walk/run fundraiser for PKU. The Fifth Annual Fast Feet for Phreedom 5K will take place on Saturday, May 5, 2018, at 10:30 AM at the Artesani Park in Brighton, MA. After a hugely successful events in the past , our goals are again to kick-off National PKU Awareness Month, bring PKU awareness to the Boston area, raise funds for PKU research, support NECPAD and the National PKU Alliance (NPKUA) operations at a local and national level, and most importantly to gather families, friends and community members together for a fun and competitive morning.
The New England Connection for PKU and Allied Disorders, Inc. is a 501(c)(3) nonprofit organization which is committed to fulfill its working mission to inspire learning, social support, research and public policy in order to help develop the full potential of people affected by PKU and Allied Disorders. We are proud to support those living with PKU, their families and professionals throughout New England.
The event will be held at DCR Artesani Park at 1255 Soldiers Field Road, Brighton, MA. The 5k race course will mimic the course used in the 2011 Cape Shore Foundation 5k. The race course starts at the large parking lot and general meeting area and proceeds along the Charles River until it loops back to the starting area. The race is done entirely on sidewalks or public grounds so runners have an obstacle free run.
The race will be split into two segments. The first will consist of the ‘Kid’s Fun Run’ for all kids under the age of 7. The race will be a short dash of about 100 yards.
After the Fun Run has commenced, the official 5k will begin. The race will be a traditional 5k of about 3.1 miles. The race will not be an officially sanctioned race, so runners will not be able to use it as a qualifier for the Boston Marathon. Once the race is finished, awards will be given out to all top finishers in their respective age/sex brackets.
When: Saturday, May 5th 2018
Times:
9:15 – 10:15 AM Open Registration
9:45 AM Kids Fun Run
10:30 AM 5k Run/Walk Start Time
11:30 AM Awards Ceremony/Raffle
10:00 AM ~ 1 PM Vendor Exhibit and Post Race Party
Where:
Artesani Park, 1255 Soldiers Field Road, Brighton MA
Parking is accessible by car with ample parking space and is within 10 miles of Boston Logan International Airport
Bathrooms are available on site.
Directions:
From I-93 North or South and Boston
Follow the signs for Storrow Drive West. The Charles River will be on the right the entire way. Travel along Storrow Drive West for just under 5 miles, following signs reading “Newton/Arlington” (note Strorrow Drive Becomes Soldiers Field Road about 3 miles into the journey). You will come to a sign reading ‘Arlington/Route 2 Fresh Pond Parkway and Newton.’ At the Flashing yellow light just ahead of this sign, bear left. Go through a traffic signal 20 yards ahead. (Harvard Stadium athletic fields on the left.) Go 0.7 mile further along Soldiers Field Road. Artesani Park is on the right, (follow signs for Public Theatre). The right hand turn is prior to the traffic signal ahead. The parking lot is diagonally across from WBZ and almost directly across from the Days Inn.
From the Massachusetts Turnpike (I-90 East or West)
Take the Allston/Cambridge exit; head in the Cambridge direction. Stop at the Doubletree Guest Suites traffic light. Just after the next traffic light 20 yards ahead and before crossing the River Street Bridge (which spans the Charles River) turn left onto the service road which parallels Storrow Drive (on the left) and the river (on the right). Follow the signs for ‘Newton/Arlington’. Go through the Western Avenue Traffic light 2/10 mile ahead. Go under the yellow overhead sign reading ‘Danger Low Clearance – Cars only’ and onto Soldiers Field Road. Go 1 mile to the yellow flashing light described in the directions above to Artesani Parking lot.
Parking
Public parking is available at Artesani Park. Race entrants can also park in the Days Inn parking lot across the street. There are additional public parking locations along Soldiers Field Road from the Elliot Bridge to Artesani Park. Also, there is a parking lot at the BBN High School on Greenough Boulevard across from the Eliot Bridge.
Public Transportation
From Central Square (Cambridge), take the #70 bus (outbound to Waltham).
From Cleveland Circle (Brookline), take the #86 bus (toward Cambridge).
From Harvard Square (Cambridge), take the #86 bus (toward Brookline)
Exit any of these buses at the corner of Western Avenue and Everett Street (382 Western Avenue).
Walk toward the Days Hotel and through the Hotel parking lot to Soldiers Field Road.
Artesani Park is across the street. Please use the overhead walkway for your safety!
For T and bus schedules, call the MBTA at 617.222.3200
ABOUT
What is Phenylketonuria?
Phenylketonuria (PKU) is a rare, inherited condition that prevents your body from metabolizing phenylalanine (Phe), which is one of the amino acids that are joined together to form proteins. A person with PKU does not have the enzyme needed to change Phe into another amino acid, tyrosine.
As a result, when the infant or adult is untreated or poorly treated, Phe rises to high levels in the blood and can damage the brain by causing mental retardation, seizures, learning disabilities and emotional problems. According to the March of Dimes, about one in every 14,000 babies born in the United States has PKU.
PKU is passed through families and people who have PKU are born with it. Both parents need to have a PKU gene to inherit the condition. If you inherit only one gene of PKU that means you are a carrier, you have no symptoms and you may not even know that you are a carrier.
Controlling PKU through diet by avoiding most forms of protein keeps Phe levels low and allows you to be healthier. Phe is found in all protein-containing foods, such as meat, eggs, dairy, and nuts. It is in many other foods, which are not generally thought of as containing protein like pasta and bread, and some fruit, such as oranges and cherries.
However, a diet without any protein would not allow you to grow and develop normally. So to control PKU and receive proper nutrition, you must also take a special formula that contains all the necessary amino acids found in proteins, except Phe. This diet must be followed your entire life in order for you to be as healthy, both mentally and physically, as possible.
It is important to understand that an individual cannot cause or prevent having PKU. We have no control over the genes that are in our body, or that are inherited from our parents, so be proud of who you are … including your genes! (www.necpad.org/pku-about.php)
Who is NECPAD?
The New England Connection for PKU and Allied Disorders (NECPAD)
is a non-profit organization that benefits and supports individuals with Phenylketonuria (PKU) and other related disorders and their families.
NECPAD was created in the early 1990s to meet the need of several families in the New England area who were starved for information on PKU and other metabolic disorders. At the time, the Internet was not around as a source of information as it is today.
Therefore, parents of children with PKU and similar conditions were very dependent on their metabolic clinics for information and resources. They had little opportunity to speak with and interact with others in similar situations, especially from different clinics.
A small support group was started by two parents getting together to talk about their children’s conditions, then it became three parents, and then four and so on. These informal get-togethers continued to grow and it didn’t take long to realize there was a significant need for an organization to provide support and information to families and individuals with these conditions in New England.
In 1995, the official New England Connection for PKU and Allied Disorders was established and became a 501(c)(3) non-profit organization. And the rest is history...
NECPAD benefits and supports individuals and their families with inherited metabolic disorders including:
•Phenylketonuria (PKU)
•Homocystinuria (HCU)
•Maple Syrup Urine Disease (MSUD)
•Organic Acidemias
•Tyrosinemia (TYR)
•Urea Cycle Disorders (UCD)
For more information, please visit our website at www.necpad.org.
The New England Connection for PKU and Allied Disorders is a proud charter member of the National PKU Alliance (NPKUA).
The NPKUA works to improve the lives of families and individuals associated with PKU through research, support, education and advocacy, while ultimately seeking a cure.
The NPKUA was formed in 2008 by parents, grandparents, and individuals across the country.
They are the first national non-profit organization to unite adults, families, regional and statewide PKU organizations, the medical community and PKU-friendly businesses to make a difference in the lives of people with PKU.
For more informaiton, please visit www.npkua.org
For information about current research supported by NPKUA, please visit: www.npkua.org/Research.aspx
Frequently Asked Questions
1. How do I begin?
Want to Participate? Just register here and join us! You can now create and manage your own personal page, share your photos, goals and get sponsors.
If you have further questions, please contact Tanya Parrazzo at necpadtreasurer@gmail.com .
2. What are the Race Options and Schedules?
There is one USATF-certified 5k route that can be walked or run, rain or shine starting at 10:30 sharp
3. What Does Pledging or Sponsoring the Run Mean, Exactly?
By committing to this event, and pledging to raise money for its success, you are helping raise invaluable funds to support research for Phenylketonuria (or PKU) as well as provide funds for community operations at a local and national level through the New England Connection for PKU and Allied Disorders and the National PKU Alliance (NPKUA). Sixty percent of all funds raised through the Fast Feet for Phreedom 5k will be donated to the NPKUA and allocated to current and future research inititatives deemed approrpiate by their scientific advisory board. Fifteen percent of all funds raised will support the NPKUA with events and programming on a national level including education materials and supporting their efforts garnering support for our community by working on a variety of very important projects including the Medical Foods Equity Act and the Newborn Screening Act. The remaining 25% will directly support our local community in New England through NECPAD events, progams, and financial support for patients and their families.
For more information about NECPAD please visit www.necpad.org
For more information about NPKUA please visit www.npkua.org
For more information about NPKUA funded research, please visit www.npkua.org/research.aspx
The PKU community is a small, tight knit one. We rely on these organizations and this ground breaking research to continue to learn more about the condition and how to better the quality of the life for those affected. One day we hope to find a cure, or “phreedom” from PKU - we start one step at a time.
4. How can my sponsors submit payment?
Online contributions can be made by credit card on the runner’s personalized page found on our website here. Just make sure to tell your sponsors to select your name from the list of runners.
5. I am concerned that I might not be able to raise the required funds. Will I be able to do it?
Even if you've never raised money before, our materials and strategies will make it easy for you to solicit and collect sponsorships from friends, family, colleagues, neighbors, and others. Experience has shown that it is not only possible, but enjoyable, to set and reach your goals. Please refer to the sample letters found on your personal fundraising page center, that explains the programs the Run supports, and you will be surprised to see how quickly friends, family, and co-workers will respond to your request to help this wonderful cause. Just remember to make it personal as well, as you want them to know that they are sponsoring YOU and YOUR efforts! And, as many companies offer charitable donation matching programs, make sure to ask your sponsors to check with their employers, as it will help you meet your goal ever more quickly.
6. Is the Run only for Runners?
No! The Run is designed as a day of fun and fitness for the whole family. It attracts both local runners in the Boston area as well as PKU family and friends from all over New England! Strollers are allowed, so bring the little ones, too!
In addition to the races, the event features a race expo with PKU industry related sponsors and local fitness and health sponsor displays, a kids run and games offered throughout the morning, music, a raffle with incredible prizes (including a 50-50 drawing!) and more. Runners enjoy additional benefits that include pre-race stretches and warm-ups led by professional fitness staff, precision race-recording, free tee-shirts for early registrants, and medals for the top three winners in each age category.
7. Do You Run Alone or as a Team?
Either! Participants can run alone or create their own team to run a USATF-certified route through a relatively flat course along the tree-lined streets right along the Charles River.
8. I have never run a race. Will I be able to finish a 5k?
Absolutely! It might take a little training and coaching, but many of our participants are first-time runners. Whether you are a novice, signed up for our 5K run/walk, or a serious athlete running our 10 K or half marathon, we will be here to inspire you every step of the way. We have had fun each year for a competitive, invigorating run or walk around the Charles River all united together for a great cause that is near and dear to our hearts. We encourage you to bring friends and families to enjoy the day and all it has to offer.
9. Is there a refund/exchange policy?
Yes. If a donation was made accidentally or for the wrong amount, simply make us aware of the issue and we will be happy to make any necessary refunds, changes or corrections. Race registration fees are not refundable.
10. Is parking available?
Public parking is available at Artesani Park. Race entrants can also park in the Days Inn parking lot across the street. There are additional public parking locations along Soldiers Field Road from the Elliot Bridge to Artesani Park. Also, there is a parking lot at the BBN High School on Greenough Boulevard across from the Elliot Bridge.
